Fresh Inhibitor Parents Discover Families Alike

by Ashley Hall

Published: LifeLines for Health, vol. 21 (2024)

We first learned that our son Maverick had developed inhibitors after spending the first few months of his life in the hospital. We were devastated by the news and after hearing that word, we were in total shock! How could this happen? Why us? But most importantly why him? It was such a scary and frightening time in our lives, and we were so lost! We thought we were already pros at dealing with the hemophilia part since it ran in my family and my middle son had already been diagnosed as having severe hemophilia A. 

That’s when I set out on a mission to start learning anything and everything I could about what life with an inhibitor was about to start looking like for us. We were in uncharted territory as no two cases I had found were the same. All I knew is that it had never ran in my family previously, so we were clueless when it came to the inhibitor aspect. I started to read stories where some kids beat them, while some never could. We hardly knew any families with young kids, and I just remember feeling so scared and confused with so many questions still left unanswered.

That’s when someone messaged me one day telling me about CHES Foundation, Inc and invited us to attend their camp, After the Shock, so that we could meet families just like ours going through some of the exact same things! That someone also just so happened to take me under her wing and helped teach me everything she knew about inhibitors and treated us like family from the start! I will forever be grateful for Mrs. Janet! She is and forever will be my inhibitor mama!! 

We jumped at the opportunity and I’m so glad we did! CHES provided us with a safe space to vent about medical issues going on in our lives, yet we were also able to get much needed clarity and guidance by other families going through similar treatments. We bonded instantly with other families and my kids were able to meet other kids going through very similar situations! They were able to have a weekend of some type of normalcy where they could laugh and play and run free knowing we had the proper help on standby if anything were to occur. 

The After the Shock Inhibitor Family camp provided onsite nurses, industry representatives who were available to answer any questions they could about certain medications and most importantly we had HELP! We had a personal helper called a Pal who had inhibitors himself so we knew we could relax and be stress free knowing they knew how to help in case an injury occurred. It was a weekend of fun and fellowship and most importantly education.

My kids loved fishing, archery, and we all enjoyed the cooking class together. Although Maverick at some point seemed to be enjoying eating the food more than the actual cooking part!  Just seeing our kids run around with other kids like them made the journey up to Camp Zeke in Pennsylvania for the After the Shock camp well worth it! The educational classes were spot on and just what my husband and I needed to help us make more educated decisions in our future! This is a smaller community that is much needed to help give us the mental and physical support we desperately needed! Nobody should fight inhibitiors alone, and having an army of people who understand exactly what you’re going through makes you feel like you can conquer anything! Especially these pesky inhibitors!

We made friendships that turned into family and bonds that will last a lifetime. Whenever we attend a new program and learn something new that we didn’t know before, that is always a win in our book. We have been fighting Maverick’s inhibitor through every other day Immune Tolerance Induction Treatment for the past year and a half and currently still fighting. Although everyday seems like a challenge, we remain hopeful and can’t wait until we get the chance to reunite with our inhibitor families once again!

It’s All in the Perspective

Published: LifeLines for Health, vol. 3 (Summer 2014)

They say that a picture is worth a thousand words. But what if three people were to describe that same picture? Is it still a thousand words, or is it now three-thousand? After all, we all seem to hold different viewpoints on everything from the sun to the bumps on a crocodile’s back. The Zhao family of Pennsylvania has 3 stories to share, but all about the same experience. Learn how Inhibitor Family Camp means a little something different to each of them.

A Mom’s Perspective
by Sha Ha

“We come from the mountains, living in the mountains. Go back to the mountains, and turn the world around.” (Clap! Clap! Clap!) Singing coming from the seats in front of me woke me up on a late night flighthomefromCalifornia.Obviously, Ryan and Lily were still having fun because of the new friends they made from the weekend. I smiled, but felt tears coming down my cheeks. Images from the past 13 years flashed back through my mind. I remembered how my world almost collapsed when my son Ryan, six months after birth, developed a huge hematoma in his right eye from a slight bump of his head on the crib. Ryan bled for more than ten days while my husband and I waited desperately for a diagnosis. To this day, the image of Ryan with a bloody eye still wakes me up at night from time to time. Ryan was eventually diagnosed with severe Hemophilia A, and later with inhibitors. In the years that followed, emergency room and operating room visits almost became a routine in our lives. I often couldn’t remember how many ports Ryan had during that time, only to be reminded by counting the scars on his chest. Because he didn’t respond to the immune tolerance treatments, Ryan kept bleeding in his joints, muscle, neck, and most scary of all, his spinal cord. We were drained, helpless, and alone. We didn’t know what the future would hold. We were desperate to find other families we could talk to. We learned about the Inhibitor Family Camp in 2012 and decided to give it a try, not sure how the experience would turn out. We came back with full luggage: a Big Stick Award for Ryan for his first self- infusion and a list of families who rode the same roller coaster as we did and who taught us that there were no hurdles we could not overcome. I made a photobook of this life-changing event and have formed a habit to open it whenever I need an extra dose of encouragement.

We have become loyal campers ever since. This year we went to The Painted Turtle, a beautiful camp snuggled against the mountains of Southern California. We met new families and reunited with old ones. The children’s cheers and laughter echoed all weekend long in the mountains and on the lake. We the parents, gathered at evening parents’ café. There, we no longer felt lonely and helpless. There, families from all over the country bonded together. There, we saw a future for our kids.

“Our kids may not run as fast as others, but their journey through life will be as rich as anyone else’s.”

“We come from the Turtle, living in the Turtle. Go out from the Turtle, and turn the world around.” (Clap! Clap! Clap!) The kids’ humming of the camp song brought me back to the airplane ride. Our world has indeed been turned around - by Inhibitor Family Camp. The world has become smallerbecause we have gotten to know families from other parts of the country; the world has become warmer because we no longer feel alone; the world has become brighter because we have built such strong community bonds. Thank you, CHES, The Painted Turtle, and the wonderful volunteers. You have made us stronger. We have a mission to accomplish and it is every bit POSSIBLE!

A Camper’s Perspective
by Ryan Zhao

The trip to the Painted Turtle was a wonderful experience for me. The best thing about it was that I felt a sense of belonging. In normal camps, I always feel awkward, or held back because of my hemophilia. I was different from everyone else and that created a barrier between other campers and me. At the Painted Turtle, however, I was free! I could do what I really wanted to do, instead of trying to act like a “normal” person. I could talk to others about hemophilia as opposed to hiding it. Everyone there had experienced the challenges of hemophilia and an inhibitor. That brought us closer together and allowed me to make many new friends.

The activities at the Painted Turtle were also amazing! They had everything from fishing to woodshop to horseback riding. There was a gym for the more active people, and a wide outdoor pavilion at arts and crafts for those who like to be indoors. I loved the woodshop and the arts and crafts center. They had such a wide variety of things to do. I could spend days there without ever getting bored! At the woodshop, my mom and I worked hard on a Pinewood Derby car. My mom had a great idea of making a painted turtle, and I turned it into a reality. We called our car “The Painted Turtle,” feeling confident that it would be a great ride. And it sure was! At the Pinewood Derby where the whole camp gathered, each family participated in the race. Creativity and competitiveness ran high. Pun’s humorous commentary filled the room with laughter. The competition was friendly but intense. In the end, “The Painted Turtle” won! That is a moment I will treasure for the rest of my life. Finally, the trip would not have been the same without the wonderful peoplethere at camp. The CHESorganizers, camp staff andactivity pals were so nice! In the woodshop, Pops was a big help. He knew how to use the woodcutting tools,and helped me shape my derby car. Pun’s puns filled my days with laughter and taught me many great life lessons too. The family pals were like family. Kelsie and K-Pod accompanied me everywhere and showed me where everything was. They were like the big sisters I always wanted to have. They made camp feel like a vacation home. The three days at the Painted Turtle passed too fast. As I waved good-bye to the red cabins, the warm California sun, and the many new friends, I promised myself that, “Painted Turtle, I WILL BE BACK!”

A Sibling’s Perspective
by Lily Zhao

This past April, my family went to the Painted Turtle. We went because my brother, Ryan, has hemophilia with an inhibitor. My family and I had so much fun at the Painted Turtle. I wanted to stay there for another week!

The activities were my favorite part. There was archery, boating, fishing, wood shop, arts and crafts, and horseback riding. In the evening, we also had a carnival and stage night. I liked all of the activities, but if Ihadtopickmy three favorites, I would choose horseback riding, the carnival, and arts and crafts. In horseback riding, we got to ride on a horse/pony and go through obstacles. The horse I rode on was named Diamond. In arts and crafts, you could make almost anything you wanted. You could even decorate a rock and put it in the “rock garden.” The carnival was so much fun. There were fun games, dancing and even prizes.

Other things I liked about the Painted Turtle were the weather and the cabins. The weather was warm and breezy, perfect for a hike. The cabins were amazing! They were nice and cozy. Last but not least (which I thought was the best), was having the family pals and staff joining us. They were helpful, funny, and kind. “Pun” and “Pops” were very funny and exciting. Kelsie (our family pal) was like a big sister. We were sad she had to leave early.“Pun”toldveryfunnyjokes.Forexample,whenIfirstmet him he said that my mom was my older sister and that I was 29 years old. I had a very good time at the Painted Turtle. I hope next year my family will come here again!

Maintaining Your Preferred Specialty Pharmacy Provider

by Mark Zatyrka

Published: LifeLines for Health, vol. 3 (Summer 2014)

Over the past ten years our bleeding disorders community has been dealing with the major issue of not having access to qualified factor providers. Many families are losing their choice of providers, or at best being frequently challenged in that choice.

When a member of the bleeding disorders community finds a good HHC (home healthcare company, also known as homecare or home infusion company, specialty pharmacy, and for the sake of this article, HTCs who sell factor through its’ 340B program), they tend to grow very tight bonds and have a level of comfort and trust with their HHC. It can be invaluable to have someone who you can always call, 24/7, who knows your exact needs and preferences, your history, etc. Having a reliable HHC can ease the burdens that come with living with hemophilia and its’ complications, such as an inhibitor. It is important that when it comes to the health of your child or yourself, you know the right factor will arrive at the right place at the right time and should an emergency arise, your HHC will be there for you.

This reality is all especially true for families living with an inhibitor, who may need even more specialized and personalized services. You need to be able to have access to a company who knows inhibitors inside and out. You have enough to deal with and no one has the time to explain every month what an inhibitor is, why you need so much factor, why you need multiple brands of factor, what a bypassing agent is and so on.

Accessing the Situation

Before you begin to fight the battle with an insurer who won’t let you use the HHC you trust and are comfortable with, it can be helpful to know why they are making the decisions they are making.

There are usually two reasons why an insurer will not allow a subscriber, who has out-of-network benefits, to use the HHC of their choice.

1. The insurer signed a “one-stop-shop” deal with one or two large pharmacies

These pharmacies may not have the lowest per unit price on factor, but the insurer sees value in the pharmacies’ pricing on all the drugs across the board as well as cost savings in only having to deal with one or two pharmacy providers.

2. “Vertical Integration”

This trend is one of the scariest in healthcare today. One definition states, “vertical integration is where the supply chain of a company is owned by that company.” In healthcare, vertical integration happens when the insurer owns the pharmacy benefit manager (PBM), the pharmacy, and even the hospital. For example, Xyz Insurance Company tells all their subscribers with hemophilia that they need to use Xyz Specialty Pharmacy if they want their factor paid for. This is a huge conflict of interest issue and we, the patients, are the ones who suffer. Like the above reason #1, the pharmacies have zero incentive to provide quality service. Once insurers remove your ability to bring your business elsewhere, it no longer matters if you are happy.

Because of these two reasons, you can see why getting the insurer to make an exception for you is such a hard battle to win.

We always hear that insurers are doing what they are doing to “control costs,” but when you look at the big picture, it is clear that it is much more about increasing profits than it is about controlling costs.

In the past, a HHC could offer a lower per unit price for factor in efforts to work with families to keep them on their services. In the two reasons listed above, neither one cares about the per unit price. HHCs today rarely if ever set their reimbursement price. Insurers decide what they will pay and that’s what HHCs accept. In fact, most insurers will not even accept lower rates when offered. When we have a client at AHF who will need large amounts of factor, we usually contact the insurer to try to negotiate a lower rate. Surprisingly, insurers have never taken us up on it. We get the sense that they do not want to create more paperwork and exceptions that they need to keep track of. We have even offered to accept a much lower rate to help a family stay on our service and again, that offer has always been declined. These experiences prove the “per unit price” is not the insurer’s priority when choosing which HHCs their subscribers are allowed to access.

Below are some tips you can try when your insurer is preventing you from choosing a new HHC or prohibiting you from staying with your current HHC. But keep in mind, the way insurers and PBMs are set up now, these battles are lost more than they are won, so the odds are stacked up against you. (But we are used to that, right!)

Tip 1: Know your plan

You can ask your HR department or call your insurer’s Customer Service dept. and ask for a written copy of your “Certificate of Coverage” (COC). This should be provided free of charge. This document explains the health benefits you and your dependents have under your plan. It details the services that will and will not be covered. This is a large document, usually 50-200 pages long. The 1-2 page outline of your co-pays and deductibles has some good information, but in order to really know what your rights are and how your factor is billed, you need your full COC. Every insurer is different, every plan type within the insurer is different, and every individual plan can be different.

Tip 2: Be prepared

If you are told a change is happening, be sure to place your monthly factor order with your current HHC prior to the deadline given to you by your insurer. You do not want to be left without factor and need to order from your insurer’s preferred provider. Not only can it take a week or more to get set up with these big PBMs, it also becomes nearly impossible to get permission to switch back to your preferred HHC once you place an order with the insurer’s preferred provider. Verifying your insurance, waiting on your physician to send over your prescription, waiting on prior authorizations and/or pre-certifications and delivery time all can take time to happen. Make sure you have adequate factor on hand for the transition.

Tip 3: Find out if your HHC is willing to fight for you?

It is difficult enough to win these battles. You really need to have your HHC fight for you because this process can consume many hours. Who you need to talk to, what questions do you need to ask, and how to ask those questions are all very important. Your HHC needs to put in the hours, and then be willing to assume some level of risk.

Tip 4: Do not take their word for it

Many times you will receive a letter from your insurer informing you that you will no longer be able to use your current HHC and you will have to switch to the insurer’s preferred provider. Some of these letters are real and some are a scare tactic. You and your HHC should call to see if there are any changes to your plan. A lot of times there are not. It is always good to get the necessary prior authorizations or pre-certifications before shipping just to make sure.

Some treatment teams will recommend their patients call their insurer to find out which providers they can use, which is definitely the easiest path to picking your HHC. However, if there were a particular HHC you would like to use, I would not recommend calling your insurer. They will tell you who they want you to use. I would suggest calling the HHC you would like to use and ask them to run your insurance information. A lot of times the HHC can bill differently, such as out-of-network, through a third party payer (TPA), or through your medical

plan, which may then allow you to use them.

Tip 5: Find out if you have out-of-network benefits

This information can be found in your COC. If you or someone in your family has a chronic illness, I always recommend picking a plan with out-of-network benefits, such as a PPO, if you can afford the higher premiums. It not only can affect which HHC you are allowed to use, but also which doctors and which hospitals you are allowed to go to for care.

If you do have a plan with out-of-network benefits, it becomes very difficult for insurers to

prevent you from using the HHC of your choice. Unfortunately insurers still find a way to deny people their out-of-network benefits even when they pay extra to have those out-of-network benefits. Some payers have moved factor to their pharmacy benefit, which requires you to use their preferred pharmacy (that they usually own), or they can simply “carve out” hemophilia and mandate which provider people with hemophilia are allowed to use, which is a discriminatory practice.

That said, many plans with out-of-network benefits will still allow you to choose your HHC. They may just give you and your HHC the runaround for a while. That is why it is so important to have your COC so you can recite the actual verbiage of your plan.

Be aware that when you do exercise your out-of-network benefits, there is usually higher co-pays or deductibles. Ask your HHC if they have a hardship program or if they work with the manufacturer of the brand of factor you use, as almost all of the manufacturers have generous co- pay assistance programs and patient assistance programs (PAPs).

Tip 6: Find out if your plan is fully-funded or self-funded

Fully-funded plans are your traditional plans. Self-funded plans are usually plans offered by large employers where the employer pays the claims themselves and they hire an insurer to administer the plan. Again, this can be found in the COC. Employers with self-funded plans usually have an additional insurance policy specifically to offset the cost of an employee with a high cost disorder, such as an inhibitor.

There are pros and cons to self-funded plans. A con for self-funded plans would be that they are not regulated by the government. So they could decide not to cover factor. That is usually not the case because good employers want happy employees. But it does happen. That said, the fact that the employer can have a lot more say and has the power to make exceptions would be a major pro for self-funded plans. So if you have a self-funded plan, you would want to go to your HR department and tell them how important it is for you to have access to your HHC. If they value you enough, they can make that change.

Tip 7: Find out if factor is covered under your medical benefit or your pharmacy benefit

Factor used to always be covered under the major medical benefit. The trend lately has been to

move factor over to the pharmacy benefit. Insurers have a bit more control when factor is billed on the pharmacy side, but we usually have much more freedom to choose our HHC when it is billed on the medical side. Check your COC. It will tell you which side factor is billed on. It will also tell you if there are exceptions. Often times, if a nurse or professional is doing the infusion, the factor can be billed under the medical benefit, which usually allows you to stay with your HHC. Also, if factor is billed under the pharmacy benefit, you are at risk of paying those high specialty tier co-

pays.

Tip 8: Ask to appeal

If your insurer is telling you that you need to switch to a different HHC, ask if there is an urgent appeal process or special consideration process. Follow that process exactly and act fast...because they do not. You can usually ask your doctor for a letter and your HHC can help you construct a letter from you stating your case. Don’t be afraid to share how difficult life can be, what services you are receiving from your current HHC, and why they are so important. Even though it does not carry the weight it used to, stress how important continuity of care is for your family. Share what you have been through and what could happen if you receive poor services.

Tip 9: Contact your hemophilia patient organizations

Contact your local, state, regional, or national hemophilia organizations and ask for support. Some organizations are definitely more helpful than others. They may be able to put you in touch with the right individuals. Ask if they can help you prepare or defend your case to your insurer or provide you with up to date info on any insurance law changes in your state. They may also be able to put you in touch with other families who are having the same problems, usually with the same insurer. Your voices together will be much stronger than your voice alone. They may also help get the media involved if it’s a big enough issue.

Unlocking the Plasma Portal (2014 Feature)

Overview

Published: LifeLines for Health, vol. 3 (Summer 2014)

Today, nearly 40 years after effective treatments for hemophilia A became widely available, there are many of us living with an inhibitor that causes uncontrolled bleeding episodes, increased disability and decreased quality of life. For some of us, these effects can be compared to those individuals who lived with hemophilia prior to factor replacement. In approximately 30% of all individuals with severe hemophilia A, inhibitors form in response to FVIII therapy, rendering any routine treatment ineffective.

Due to the history of pathogen transmission in the 70’s and mid 80’s from human-source FVIII, recombinant

FVIII is often the only treatment option patients are given. As many of us have discovered, however, not all FVIII products work the same for each of us. Some of us have found that after years of unsuccessfully trying to treat with different recombinant products, bleeding episodes can be managed better with human-source FVIII.

Due to the changes and advances in plasma collection, manufacturing and production over the past 20 years, perhaps it is reasonable to consider human- source FVIII as an option for patients with difficult to treat symptoms of hemophilia A.

History of Factor VIII

Human-source FVIII became widely available in the 1970’s, allowing hemophilia A patients, for the first time, to treat bleeding episodes at home, to travel and to have surgery1. These products created a significant improvement in the quality of life for individuals with hemophilia. Lengthy hospital stays and lengthy treatments became a thing of the past. The lifespan of an individual with hemophilia A could now be increased dramatically. It wasn’t long after their introduction however, that it was discovered the use of human-source FVIII carried a risk of pathogen transmission. Many of us had family members who became infected in the 1970’s and 1980’s. It was by far the most tragic era in the history of hemophilia treatment.

Recombinant versions of FVIII, first introduced in the early 1990’s,1 were not just hailed as welcome additions to the hemophilia A treatment toolbox, but signified a complete change in the way we treat hemophilia A to this day. Along with increased product choice and supply of available treatments, the risk of pathogen transmission was significantly decreased. Prophylaxis treatment became the standard of care, drastically reducing the number and severity of bleeds and the subsequent joint damage they cause. For many of us, prophylaxis meant the ability to live an otherwise “normal” life with the opportunities to participate in sports and other activities that would have been considered too risky, dangerous or impossible.

Inhibitor Development Necessitates a New Outlook

Managing a chronic neutralizing inhibitor is a daunting challenge. Its’ impact on the individual and the family’s overall quality of life is debilitating.Many of us have spent precious years and resources attempting immune tolerance induction (ITI) with large, frequent infusions of recombinant FVIII,or large, frequent volumes of bypassing agents with little to no success. The options for treatment are extremely limited, while the bleeds andcomplications are abundant. Reconsidering human-source FVIII – not an easy choice given our community’s history, as a way to manage bleeding episodes soon became the only choice for many of us. Faced with a diminished quality of life, many of us consulted with our medical teams or began researching the safety of human- source plasma on our own as a possible treatment option. What was found was that our bleeding episodes could again be managed. For many, immune tolerance was successfully completed with human-source product.

It is highly doubtful that there is a single medication, prescription or otherwise that does not carry the risk of side effects, some more harmful than others. As stewards of our own (or our child’s) health, it is imperative to know the risks, consequences and benefits of any medication we use. Our community should never forget the devastating effects of products that were not stringently screened, tested and manufactured.

The biggest challenge in the hemophilia community today is inhibitors. Although no one can say with certainty what causes them, we do know that at least 30% of the severe hemophilia A population will develop one. We as custodians of our own (or child’s) health in conjunction with our health care team need to know all of the options for treatment available to us, along with their possible consequences. This knowledge for those of us living with an inhibitor could make a drastic difference in bleed management, joint health and overall quality of life.

Final Thought

We do not all have the same response to FVIII products. There are those of us who develop inhibitors or are poor half-life responders. We have learned that some of us do respond successfully to human-source FVIII products.

No one knows for sure why, but after years of uncontrolled bleeding, many of us wish we had considered human-source products long ago. We would like to encourage physicians, nurses, and caregivers that it is okay to bring up the topic of human-source FVIII products in the discussion with patients and parents, and vice-versa.

Authored by:

Jake Rollins - Adult with severe hemophilia A. Human-source FVIII successfully tolerized his inhibitor.

Janet Brewer - Mother of 2 sons with severe hemophilia A. One of her sons developed an inhibitor which was partially tolerized after switching to human-source FVIII.

Eric Lowe - Adult with severe hemophilia A. Human-source FVIII successfully tolerized his inhibitor.

References

1. Lusher JM. Development and introduction of recombinant factor VIII - a children’s experience. Haemophilia. 2012;18:483-86

2. Viel KR, Afshin A, Abshire TC, lyer, RV et.al. Inhibitors of Factor VIII in black patients with hemophilia. N Engl J Med. 2009;360:1618-27.

3. www.pptaglobal.org Plasma Protein Therapeutics Association (PPTA)

4. Klamroth R et al. Pathogen inactivation and remocal methods for plasma-derived clotting factor concentrates. Transfusion. 2013:9.

What Inhibitor Family Camp Means to Us:

It Just “Clicks”

Published: LifeLines for Health, vol. 4 (Winter 2014)

A Father’s Words

by Wayne Camarro

This is the second year my family has attended Inhibitor Family Camp at Victory Junction Camp. My wife Jackie and I went with our sons Jacob, age 9 who has Hemophilia A with an inhibitor and our son Harrison, age 17. Harry has Lenox Gastau Sydrome, which means he is non-ambulatory, non-verbal, is developmentally impaired and has a seizure disorder.

Attending camp gives Jake and our whole family a chance for fun, education, relaxation and friendship with other families that are or have gone through some of the same experiences with hemophilia and an inhibitor that we have. We see it as a mini family vacation where we get to see old friends, make new ones, share experiences, learn new ways to cope, relax and ease pain.

It gives us a chance to see Jake playing with kids who understand him and all that he has been through. To see him make friends so fast warms my heart. There is no awkward adjustment period for them to bond, they become fast friends in minutes and are off and running to the next fun activity.

”There is no worry that he’s not going to fit in or have other kids fear him or label him as different due to his condition. He just ‘clicks’ with the other kids.”

Inhibitor Family Camp gives Harry a chance to experience cool activities like archery and horseback riding for the first time, that he might not have had a chance to do otherwise because everything is adapted! We have taken Harry to traditional campgrounds previously, but they tend to be over crowded and are typically not equipped to handle kids with special needs. At Inhibitor Family Camp the staff is very well versed in caring for kids of his ability level, which makes us so much more comfortable and makes it so much easier for him to participate. You can see it in the huge smile on his face!

For us as parents, Jackie and I get the benefit of attending informative sessions presented by medical professionals. Open group “jam” sessions with the other visiting parents are a favorite of mine. We get to discuss topics such as how our kids’ siblings are dealing with this illness. Having such a varied group together in one place and still being able to relate to each other’s struggles is truly amazing and not an experience that is easy to duplicate.

We really look forward to getting a break from the day-to-day challenges of dealing with hemophilia and an inhibitor. No matter how overwhelming things can seem at times, knowing we have our Inhibitor Family Camp experiences to fall back on is huge. We truly appreciate the effort that goes into making this event happen. Our sincere thanks for letting us be a part of the Inhibitor Family Camp family.

A Mother’s Words

by Jackie Camarro

There are many things I enjoy about the CHES Inhibitor Family Camp weekends. I enjoy meeting families from all over the country. I enjoy the feeling of community you get when you know that the people around you understand what you are going through when raising a son diagnosed with hemophilia and an inhibitor.

It’s nice to not have to explain what hemophilia is and then add all that additional information needed to explain the inhibitor too. All you have to do is introduce yourself and say the diagnosis and the conversation has begun. It’s fun to participate in the Serious Fun camp experience too.

My favorite part of camp is interacting with other parents, listening to their story and realizing that we are a community of people with many similarities. I never would have had the opportunity to meet such awesome people and hear such inspiring stories. These stories empower me and give me the strength to continue.

As many parents in the inhibitor family know, there are times that I, as a parent have been worried about my child’s future. It is very hard to see your child in pain or to see him sad because he can’t do all the things his friends can do. It hurts when I see him become angry because of his medical condition.

Inhibitor Family Camp is also great for my son. It’s nice to see him make new friends, laugh, play and do all sorts of fun things that can only be done at a Serious Fun Camp.

“He needs to know that he is not alone and that other children can relate to his situation too.”

Exploring the Science of Mindfulness

Published: LifeLines for Health, vol. 4 (Winter 2014)

by Dr. Maureen Strafford

Mindfulness is a word that we are hearing about quite a bit these days. In January, Time Magazine had a cover story called “The Mindful Revolution” with the subtitle “Finding peace in a stressed- out, digitally dependent culture may just be a matter of thinking differently.” Do a search on Amazon and 9,893 books are found with the word “Mindfulness” in the title, including a book by U.S. Congressman Tim Ryan called “A Mindful Nation.” One might think that “Mindfulness” has just been discovered by our 21st century society. In fact, mindfulness and the use of mindfulness meditation techniques can be traced back to ancient meditative and contemplative practices and are seen in many, if not all, religious traditions.

However, the practice of mindfulness techniques --- practiced in a non-religious, secular manner --- with the introduction of such techniques into health care settings, the classroom, the corporate world and even in the locker rooms of national athletic teams --- has increased dramatically over the last several decades. In 1979, Dr. Jon Kabat-Zinn introduced mindfulness meditation into mainstream medicine when the University of Massachusetts Stress Reduction Clinic was begun at the University of Massachusetts Medical Center in Worcester, MA. Patients with a variety of medical problems attended an 8-week, once a week meeting with a group of other patients and a leader. This course was called Mindfulness-Based-Stress- Reduction (MBSR) and has now expanded to thousands of hospitals across the world where many thousands of patients have found improvement in symptoms including anxiety, pain, and depression from a wide array of diagnoses.

But what do we mean when we say Mindfulness? The definition of Dr. Jon Kabat-Zinn has been widely quoted.

“Mindfulness means paying attention in a particular way; on purpose, in the present moment and nonjudgmentally.”

We have all experienced being “mindless.” We park our car in the morning and when we return at the end of the day, we have no memory where the car is. Where was our mind when we were parking our car? We
were certainly “not paying attention on purpose.” We have also experienced how one thought can spiral into an entire narrative usually of doom and gloom or negative self-descriptions or we can create a fantasy pleasurable scene and miss the unfolding of the present moment. We may experience pain and fear and anxiety that leads to panic that leads to increased suffering. Mindfulness slows down the reactive, out of control thinking called rumination. Mindfulness can help us observe the moments when our pain is different, diminishes, even disappears. The word nonjudgmental is so important. When we stop labeling every experience as good or bad, we eliminate the reactivity that causes us additional suffering.

The way we “practice” mindfulness starts with the formal practice of sitting meditation, or movement practices such as yoga, tai chi, or walking meditation. There is no “right” or “wrong” way to sit and meditate. The breath is a good anchor for our attention because it is always
there and has a changing quality to it. We may attend to the breath and have the shopping list for dinner pop into our heads and pull our attention away. As a parent firmly but lovingly moves the wandering child away from the dangerous road, so too with attention to the breath, we bring our attention back to the breath without judgment – no statements that “I’m a lousy meditator” or “This isn’t working.” With this commitment to attention and awareness, we move away from reactivity and rumination and the tendency of
the mind to create entire scenarios and screenplays that may be pleasant or unpleasant and move into the vibrant experience of the present.

While MBSR courses were blossoming all over this country and internationally over the last several decades, research on MBSR was also exploding and describing the positive effects of this practice on both physical and mental health. Research --- including a fascinating look at the brain with tools such as functional MRI (a scan of the brain where areas that are stimulated “light” up on the scan) --- began to suggest that indeed the brain can change and areas where anxiety, anger, and fear “reside” in the brain have been shown to quiet down when a person meditates. Of great interest is that the practice of mindfulness may have long-lasting effects and that the “brain” does indeed change. The “ruts” created by years of rumination, anxiety, and worry begin to “smooth over” as practice time increases. Mindfulness meditation --- even after the basic 8 week MBSR course --- has demonstrated a strengthening of the immune system, significant amelioration of depression comparable to the use of anti-depressant medications and improvement in the symptoms of Attention Deficit Disorder (ADD). The quality and quantity of excellent clinical research on the beneficial effects of mindfulness has exploded and drawn the attention of neuroscientists and other basics research scientists. Teachers, health care providers, veterans suffering from PTSD, prisoners, children and patients with a wide array of symptoms and challenges improve the symptoms of their diseases, diminish the risk of caretaker burnout, and uniformly report an improved quality of life, including improved relationships.

So how does one learn “Mindfulness” and how does one implement the changes mindfulness can stimulate?

We practice! The “formal” practice complements and strengthens the “informal” practice. The formal practice
is the time we take to “practice” observing our experience in a different way. We can practice sitting and using the breath as our anchor. We can practice yoga and observe our movements in a mindful manner.
We use the skills learned and practiced during formal sitting meditation to observe the simple activities of daily life with an energized and creative curiosity. This is the “informal practice” of mindfulness when we observe the sensation of the splash of water on our face, the feel of the weather on the skin, the taste of a small morsel of food and in this “informal” practice, we experience life in a more deeply felt manner with less reactivity and suffering. We also experience benefits in the informal practice of mindfulness when we have pain or anxiety. We may observe moments when our pain is intense and moves to areas of our body and even a moment when the pain disappears. We learn that we are not our thoughts and we can move away from the “over and over” rumination of our worried mind.

How does one train or learn more about mindfulness and how to include it as part of a health self-care regimen?

There are now programs throughout the US, many based in hospitals that may be covered by health insurance. There are also therapists who have been trained

in MBSR and offer traditional 8-week MBSR courses. A review of the UMass Center for Mindfulness website - http:// www.umassmed.edu/cfm/ - is a wonderful place to start in understanding the training required for MBSR teaching. A web search for MBSR courses and teachers in your area will be a productive place to start and after reviewing the UMass site, you will have good questions to ask when looking for MBSR courses. While programs are more limited for children, local mindfulness teachers can guideone in finding well-qualified teachers for children. There are increasing resources in books and apps that will also be helpful and asking your child’s pediatrician and teachers can also be a helpful place to start. The 8-week MBSR course
is very helpful if doing it on your own is more difficult, and the group format adds to the insights gained as one progresses through the course. For those who are interested in more individual work or want to investigate a bit more on your own before committing to an MBSR course, there are many books, online courses and apps to help you.

We have a wealth of resources to learn about Mindfulness and the effect on health, well-being and relationships. But even before one Internet search or book is ordered, remember we always have our breath. Our anchor. Sitting here reading, take a moment to find your place in your seat. Slowly bring attention to bringing your shoulders back, and moving your body into a more upright position, slowly close your eyes if that feels comfortable where you are and bring your attention to that part of your body where the breath is noted – the nostrils, the upper chest, the belly. Notice how the quality of the breath changes with breathing in and breathing out. Notice how thoughts –“I don’t have time right now.” “I think this is not going to work.” “I can’t forget to send the check.” pop into the mind like popcorn being cooked. And with the gentle firmness and kindness of the parent moving the child off the dangerous road, bring your attention back to the breath. Some days, you may find yourself pulling the wandering mind back after every breath. That’s practice .... not “bad” meditation because there is no “good” or “bad” meditation. A great start to understanding mindfulness is with you at all times --- your breath.

As a parent, you might find it helpful to do some practice and observe the positive effects with yourself before introducing some of the practices o your child. The introduction of mindfulness into the classroom has found positive results. Better classroom management and calmer children result when mindfulness has been utilized and teachers feel less stress as well. Programs such as the Mind-Up Program (www. thehawnfoundation.org/mindup) and Mindful Schools (www. mindfulschools.org) have established programs for teachers and schools.

An overview of some of the books, programs and apps available might be helpful as you seek out more information about mindfulness and how to help yourself and your family with dealing with the stress of everyday life and the particular stress of learning healthy coping strategies for chronic medical conditions.

Dr. Maureen Strafford, Associate Professor of Anesthesia and Pediatrics, Tufts University School of Medicine. The study of the effects of pediatric pain and the positive effects of mindfulness has been a career long concentration.

Recognize Your Own Resilience: And Then Build On It

Published: LifeLines for Health, vol. 4 (Winter 2014)

by Dr. Gary McClain, PhD

If you are living with the challenges of a chronic condition – or if your family member is – then this phrase most likely has special meaning to you. The successes, the frustrations, and those unexpected curveballs that can come your way.

But, yet you keep yourself going, one step at a time. How do you do it? Psychologists call that resilience. The ability to recover or adjust to misfortune or change. In other words, picking yourself up, dusting yourself off, and getting back on the path.

How’s your resilience these days?

My clients who are living with a chronic condition – and learning to roll with the ups and downs – often tell me that this experience has taught them to recognize their own resilience. They are able to tap into sources of strength, and to be resourceful, in ways they never thought possible. Yet, at the same time, one of those curveballs, or a series of curveballs, can leave you wondering if you’re all that resilient after all.

So you might ask: Are some people more resilient than others? In other words, is resilience a gift that some of are given while others aren’t so lucky? Actually, no. The good news is that resilience can be learned by following some basic guidelines for practicing resilience-building skills to develop a more resilient mindset. And practicing these skills can also help you to further strengthen your resilience. Kind of like toning up at the gym.

1. Take an inventory
Use the past as a teacher. Think about the rough spots that you have
hit over the years. What’s gone well for you? And not so well? Life’s tough lessons can leave us with a gift: experience. Review how you have dealt with challenges in the past. Use that learning to take an inventory of what’s in your resilience toolbox. This will help you to identify your strengths as well as to better understand what tools you want to add.

And then, decide to believe in yourself. Being a resilient person starts with believing in your own potential. Bolster your own self- esteem by giving yourself a daily pep talk, with messages like “I can do it” and “I’m ready to handle whatever comes my way.” Intention leads to action.

2. Stay Hopeful
Decide to focus on what’s going right in your life. Take the time to recognize the simple pleasures that exist all around you. Remind yourself of everything that is good in your life. Tell that bleak voice of negativity to be quiet, while you pay more attention to what’s possible.

3. Stay connected to your support network
Who’s in your court? Make a list of the people in your life that you count on to stand by your side when you need a listening ear, and who count on you in return. Stay in touch with them on a regular basis, including regular check-ins with each other. Schedule time together. Reach out when you’re feeling alone. Vent when you need to. Be supported and give support in return. We are all in this together!

4. Laugh (or at least smile)
Having a sense of humor is a great antidote for stress. And let’s face it, sometimes you just gotta stand back, shake your head, and laugh. Better yet, find someone who can have a laugh along with you. Humor helps you to maintain your perspective and avoid getting caught up in the downward spiral of helplessness. Humor and resilience go hand in hand.

5. Maintain your self-care
It (almost) goes without saying that, to be resilient, you need to feel your best. That means staying on top of your health by getting regular check-ups, staying in touch with your healthcare team between visits, being compliant with your treatment, and maintaining your self-care routine. By the way, this goes for children and parents! Just had to throw that in.

6. Update your knowledge – continuously
Stay abreast of the newest thinking about what you can do to take the best possible care of
yourself, and how your loved ones can take care of themselves. Medical science is constantly on the
move, so keep up with what’s new in treating your condition. Be your own expert. Knowledge is power!

7. Keep your problem-solving muscles exercised
When you bump up against a new challenge, go off by yourself and do some brainstorming. Define the challenge. Review your strengths, as well as the resources that you have to draw upon to solve it. Come up with a potential solution. By going through this process, you will have a clearer idea of what you can do, including what’s under your control, what you can’t control, and where you need help. This is resilience in action.

8. Accept that life is always changing
Humans are hard-wired to avoid change. But we know that life keeps moving, and that means that nothing stays the same forever. In other words, we aren’t in control of everything that occurs in our lives, even if we think we should be. Fighting change is like fighting against yourself, and your own potential for growth. So give up the battle and go with the flow. You’ll be surprised at how much more energy and optimism you’ll have.

9. Know who to ask for help, and then ask
Keep your resource list up to date. Part of being resilient is keeping track of the resources that you can draw upon when you need them. People who are willing and able to step inand lend you a hand or give you some guidance. Services and organizations that you can enlist. Information sources that you can tap into. Resilience doesn’t mean doing it alone, it means asking for help when you need it.

10. Have a vision for the future
Now, back to the hope thing. Take time to create a vision for the person that you want to be in life – how you want to live, what you want to accomplish, what you can do to be there for the people that you care about. Having a vision for our future motivates you to be more resilient. While you’re at it, create a vision for your family. Think: Optimistic. Realistic. Flexible.

11. And when the going gets tough... Remember that the tough go shopping
Shrink shopping, that is. If you need some additional help in strengthening those resilience muscles, then talking with a mental health professional can give you some additional perspective and help you develop new resilience skills as you face life’s challenges.

Two steps forward, one step back. But two steps forward again. Look how far you’ve come in the face of a lot of challenges. Celebrate your own resilience! And challenge yourself to build even more resilience into your life!

Gary McClain, PhD, LMHC, is a therapist, patient advocate, and author, specializing in helping clients deal with the emotional impact of chronic and life-threatening illnesses, as well as their families and professional caregivers. He works with them to understand and cope with their emotions, to learn about their lifestyle and treatment options, to maintain compliance with medical regimens, to communicate effectively with the medical establishment, and to listen to their own inner voice as they make decisions about the future. His email is: gary@JustGotDiagnosed.com. He welcomes your questions and comments.

New Pilot Program Unveiled A Patient’s Perspective

Published: LifeLines for Health, vol. 5 (Summer 2015)

by Tom Sitzler

The recent Men’s Inhibitor Retreat, hosted by Comprehensive Health Education Services with an educational grant from Kedrion, held at the Excalibur Hotel in Las Vegas on April 24-27, 2015, was very informative and definitely worth attending. Not only did I learn some things, I also created new friendships! It’s always nice to connect with others within our inhibitor family. Sometimes the most important things that I learn come from others with inhibitors. Yes, the professionals will provide important information that is useful, but by talking to others about their own experiences, resources, etc., is also helpful.

The first night in Vegas, most of us were there for supper and a social, and it was a nice way to meet people in a relaxed setting; the entire weekend was a relaxed setting. Several people were especially impressed with their dessert - can’t go wrong with chocolate!

Saturday started early with a nice breakfast and more socializing. Throughout the day we had doctors and nurses talk to us about a variety of topics. The first presenter, Dr. Mark Heiny from the Indiana Hemophilia and Thrombosis Center, spoke about different treatment options. I especially liked that he didn’t pressure us in what we should or shouldn’t be using for treatment. Our next presenter, Dr. Paul Bregman informed us of the use of medical cannabis/marijuana. He was very passionate and informative. The discussions brought up some very good questions and I learned a lot about this controversial treatment. I found it interesting that it can be made into a cream or oil. The CBD (cannabidiol, an active ingredient in cannabis) cream could be helpful during a bleed as an anti-inflammatory, and I wouldn’t be against trying it, especially if it helps with some joint relief. After an enjoyable lunch, we learned some valuable lessonson how to access veins easier. Who knew that a strong LED flashlight can help you locate a vein? That was a nice tip!

Saturday night was full of fun. We all went to the Monte Carlo Hotel for dinner and a show. After dinner we went to Blue Man Group. I can’t think of a better way to end an evening. They put on a great show; I would go see them again! Sunday morning we had breakfast and time for more relationship building. Our last presenter, Don Molter from the Indiana Hemophilia and Thrombosis Center, spoke about career counseling. This was a good opportunity for people to learn about various funding sources for college and how to pick a career that is a good fit for you. He stressed the importance of picking a career that is suitable to our interests and limitations. Overall, this was a great weekend. We had an opportunity to become more educated, meet new people, and create some nice memories.

Tom Sitzler is an adult with hemophilia and an inhibitor. He is a vocational counselor in his home state of South Dakota where he lives with his wife Shirley. Tom has served on manufacturer’s Consumer Councils and is a frequent attendee at Inhibitor Summits.

The Pavri’s First Inhibitor Family Camp: “The Painted Turtle”

Published: LifeLines for Health, vol. 5 (Summer 2015)

Written by: Farah and Porus Pavri Edited by: Yasmin Pavri

Day 1: Our very excited wait came to an end when we boarded the plane to California in April, for the first time, to attend Inhibitor Family Camp at The Painted Turtle. After a long trip from New Jersey to California, we boarded a bus which took around two hours to get to the venue. The route leading to camp was very scenic. As soon as our bus entered the premises, our Camp Director, April was there, all dressed up, to welcome us. She seemed more excited than any of the participants. Her excitement and enthusiasm could make even an antisocial person come alive!

We were dropped off near our cabins. Ours was “Yellow 3”. A beautiful cabin that fit two or perhaps even three families. The cabins were very creative on the inside and had a beautiful welcome basket and kit ready for us.

There we also met our camp counselor. His name was Dave. Such a fantastic person. His level of maturity made us feel very comfortable leaving our son with hemophilia and inhibitors with him. He was caring and went out of his way to see that our trip was all worth it.

The next person we met was a very interesting person. His name was “PUN”. He looked funny and spoke bone-tickling funny. He immediately made us feel comfortable and engaged us in some hilarious conversations. The one very outstanding quality that he had was remembering each and everyone’s names. How amazing is that? Some of us can’t remember the name of a friend or a neighbor we met two days back, but he was tremendous. He was the life and soul of the camp. Our family loved and adored him. A humble person by nature and someone who loves, simply loves kids.

Being our first camp experience, we didn’t know there were fixed times to eat and only a certain amount of minutes were given to complete your meal. It worked perfectly for parents who have fussy children that take over an hour to eat at home.

Day 2: Saturday morning we started our day with archery, ate breakfast, went horseback riding (met/saw some beautiful horses), did wood carving with POPS (made a turtle, the kids made their pine wood derby car and we also made a “PAVRI” sign key holder). Then we had lunch and the adults went for an education session while the kids had a blast with their camp counselors and enjoyed blasting rockets. After that we went fishing, had dinner and enjoyed some restful quiet time.

Day 3: By now we were a bit tired so we missed the early morning activity which we can go to before breakfast. After breakfast, we went boating, did some arts and crafts, had lunch, and the kids had a lovely time playing on the huge chess board. Later we attended a beautiful session on how to keep calm when you are in the middle of a bleed. We also learned that we must be kind and loving to the part of the body that is bleeding instead of cursing and saying bad things about it. Then it was time for the main attraction of the camp. Ta na na na.... Ta na na na... The Pine Wood Derby organized by our very own POPS. Porus really wanted his car to win and was pretty disappointed when it was eliminated in the first round :( After dinner we enjoyed the talent show in which Farah participated and played the keyboard. We went to the camp store and picked up some souvenirs for ourselves and the kids enjoyed an awesome magic show by our very own Pun.~

Day 4: Time to go home. Mrs. POPS had put together a wonderful presentation of family pictures and several other pictures taken at various activities which we saw. We had to pack and say goodbye to our friends, both old and new, and a goodbye to our cabin, and our swing outside our cabin, and the big chess board, and our wonderful counselors and friends and volunteers at the camp. Thank you Janet, Eric and Joan for inviting us and giving us this beautiful camp experience that we had only been hearing of in the past. Our kids had a blast and seeing their enjoyment gave us adults a very satisfying feeling. The environment was safe and the “Well Shell” took care of all our medical needs. Our kids still have and love their turtle pillows. Porus has “Lee” written on his and remembers his new buddy Lee fondly when he cuddles up with the pillow. We really look forward to coming back and having the same fun each year.

Follow the Heart Line (2015 Feature)

Published: LifeLines for Health, vol. 5 (Summer 2015)

Written by: Russel Friedman

Moms: “Do you remember how you felt in the moment you first became aware that you were pregnant with your child?”

Dads: “Do you remember how you felt in the moment your wife first let you know that she was pregnant with your child?”

We know that every parent, from that moment of awareness of a coming child, begins to create hopes, dreams, and expectations about the future. Every one of the images they conjure up is glorious, uplifting, and happy. “My child will be brilliant, a great artist, a gifted athlete, socially gracious, and will of course be of service to humanity and do greatworks of charity.” It may sound a little overblown, but you know what we mean. Many expectant parents vow that they will do “right” the things their own parents did “wrong.”They will love and cherish their children in better ways, so that their lives will be better.T he pledge we each make is that our children will have a better life than we had, no matter how good [or bad] our life and circumstances have been.

Some people, who had ideal childhoods [we’ve actually met a few], make a commitment to recreate and even improve the kind of loving atmosphere and treatment they recall from their youth.

THE THIRD QUESTION

The two questions that opened this article were asked in a speech we made to a group of parents who were at the first annual convention of an organization that had nothing to do with hemophilia. It was a group whose common linkage was that each member had a child, or children, who were bound up in the tentacles of drug or alcohol addiction.

None of them had imagined they would wind up in that hotel conference room15 or 20 years after their child’s birth. Nor that they would be with nearly one thousand other parents that weekend whose hopes, dreams, and expectations had also been dashed on the rocks of a condition that wreaks havoc on all who are caught in its wake.

Like them, we imagine that you never thought in the moment you learned you were going to have your child, that one day you would be reading an article like this. There was also a third question we needed to ask. It was an awkward one: “How many of you are still married to the co-parent of the child whose condition caused you to be here?” The limited showing of hands indicated a divorce rate much higher than the national average. Dealing with situations that are outside the range of normal puts inordinate pressure on marriages.

Hemophilia, and later, the complication of inhibitors, undoubtedly affect everyone concerned to their emotional cores. Along with that, each family member brings their own beliefs and feelings to the painful task of dealing with the massive loss of shattered hopes and dreams.

Many people carry forward the emotional reactions they had to other grief-related events that affected their lives. Like most of us, rather than beingtaught how to effectively grieve and complete their relationship to what had happened, they learned to bypass those feelings, to bury them out of sight and out of mind.

But the reality is that if you don’t deal with those feelings, eventually they will deal with you, and potentially, with some very negative consequences. Until you deal effectively with the emotions that you may have stored, it can be exponentially difficult to deal with the ongoing emotions that are constantly provoked by living with a condition that requires 24/7 hyper- vigilance. In guiding people who must deal with the daily confrontation of an ongoing condition, we have helped a great number of them not become divorce statistics. We will pass some of that help on to you in this article.

MY GET UP AND GO, GOT UP AND WENT

Our experience with grieving people suggests that there are two things that almost universally impact everyone whose lives have been affected by losses of all kinds. First, is they have a very hard time concentrating, and second, is the ongoing grief drains energy. While this is typical in the early days following a death or divorce, it can be constant when dealing with a continuing situation, as is the case with parenting a child with hemophilia and an inhibitor.

The inability to focus or concentrate looks like this: You walk into a room to do something and then have no idea what you wanted to do when you get there. That’s just one example. We’re sure that you can think of other ways in which you have found it difficult to keep your mind, body, heart, and soul all in the same place at the same time. Having to be on high alert at all times is physically draining and emotionally exhausting. Dealing with an ongoing condition that requires both physical and emotional attention tends to deplete our capacity to bemost effective. We can feel as if we’ve been ground down to nothing.

Because of the potential for emotional exhaustion, we believe it essential that you learn how to deal with any emotions you’ve stored up over time, and how to deal with the ones that crop up daily. One benefit of dealing directly and effectively with your emotions is that you will be able to focus better on all aspects of your daily life and participate fully in all of the relationships that are important to you. And you will be able to stay emotionally present for your child and others who are important in your life.

DON’T FEEL BAD— HERE HAVE A COOKIE, YOU’LL FEEL BETTER

Advising someone who obviously feels bad not to feel that way makes no sense at all. To illustrate, we use the classic story of a child who comes home from pre- school with tears in her eyes. Her mom or dad asks, “What happened?”, and the child responds, “The other little girls were mean to me.” To which the parent says, “Don’t Feel Bad, here have a cookie, you’ll feel better.”

In reality, the cookie doesn’t make the child feel better, it makes her feel different. She has merely been distracted from her hurt feelings. And, she has been told by her parents whom she trusts, not to feel bad—even though that makes no sense at all. She has also been taught that when she feels bad she should medicate herself with a substance, in this case, sugar.

Ten years later, we act surprised when after her first romantic break-up, she starts drinking beer
or smoking marijuana to push away her hurt feelings. Yet, she’s doing exactly what her parents taught her—treating her feelings with substances. Those actions are the result of the well-intended, but misguided, idea of trying to tell someone not to feel bad when they already do.

Another parallel is any attempt to help our mates by trying to shift them from their normal feelings of fear about what might be happening with their child to the intellectual or spiritual ideas that would remove those feelings. Sad, painful, or negative feelings are natural and even serve a purpose. Anything that indicates that we shouldn’t have them is counter-productive and removes some of the safety and trust that partners need to have with each other and with their children.

A better response to the little girl, instead of the offer of cookies, would be, “Ouch, how sad for you to have
your feelings hurt. I can remember that happening when I was young, I didn’t feel good either.” Usually, a parent doesn’t need to say much more than that and the child feels heard and is ready to go out and play. Sometimes the child will want to talk more about what happened and that’s okay, too. But first you must really hear the hurt feelings, and not try to fix them, just acknowledge them.

BE STRONG OR BE HUMAN – PICK ONE

It’s not uncommon, in the face of a medical diagnosis, for each parent to react differently. Each of us has our own style of communicating [or not] the feelings we are feeling. It is at this point, that a gender-based socialization may play a role. There’s a lot of talk about gender and feelings, but we have never been able to correlate happy or sad feelings exclusively to either males or females. One of the major myths we all learn in childhood, is the incorrect idea that when faced with losses, we must BE STRONG and/or, BE STRONG FOR OTHERS.

Men, seeing the emotional impact the diagnosis of their child’s condition has on their spouses, will often try to “Be Strong” for their wives. Even though those men are also emotionally affected, they sometimes perceive it as their job to take care of their wives. In so doing, they often push theirown emotions about their child’s condition aside, in an attempt to come to the aid of their wives. When the man hides his emotions in an attempt to be strong for his wife, his non- display of emotions will appear to his wife as if he doesn’t care and doesn’t love their child. Nothing could be further from the truth. He cares and loves, but he’s trapped inside the idea that in order to “Be Strong” for his wife, he must not show his feelings.

Compounding the issue is that it’s not uncommon for both parents to try to Be Strong for their child, who then receives very mixed messages, as his parents’ verbal and non-verbal communications don’t match. This is very confusing for the child who’s having his own struggle adapting to the reality of his condition.

We think to be open, honest, and emotional is what strong really looks like. We’d like to give you a choice: You can Be Strong or you can Be Human, pick one!

FEELINGS AREN’T BROKEN – THEY DON’T NEED TO BE FIXED

Your spouse is no different than your child when feelings are the presenting issue. He or she needs to be heard and not fixed, and definitely doesn’t need to be given substances to cover up feelings. So if your mate has a long face and you ask what happened, and they say, “I’m really scared, I think Joey’s having a hard time,” you must NOT respond with “Don’t Feel Bad.”

Your response would be better if it sounded something like, “Yes, I can hear that you’re scared, and I’m worried also.” Think about the impact of that give and take: No judgment of the other person’s feelings, no attempt to switch the first partner from heart to head, and the creation of a stronger connection by telling your own emotional truth. All of that reinforces trust and safety between the couple at a point when they are really needed.

LISTEN WITH YOUR HEART, NOT YOUR HEAD

No matter when the diagnosis hits your family, it’s not too late to start using this new and better idea for debriefing each other on a regular basis. After all, hemophilia is going to remaina central part of your life. The constant stimuli that create emotions in each member of your family are not going to stop. You must become better equipped to deal with the frustration of living with and managing the situation, which includes the never-ending reminder of the original hopes, dreams, and expectations you had for you and your child.

The little girl in the pre-school/ cookie scenario could just as well have been a little boy.
Both genders are subject to the “cookies for feelings” trade off negotiated by adult guardians. And though we did mention that gender sometimes plays a part in how we behave in a crisis, there are no hard and fast rules as to which partner might be “strong” and which one might be “emotional.”

Within many couples, both partners try to give unsolicited opinions and advice—even though none were asked for. When your mate or child tells you how he or she feels, what they most need and want is to be heard, not fixed.

Our final word on this is, “Listen with your heart not your head.” Be a heart with ears. Do that for each other and your relationship to each other will expand as will your ability to really hear your affected child, as well as any other children you may have.

LISTENING VS. HEARING: A DISTINCTION WITH A DIFFERENCE

There’s a world of difference between listening and hearing. Unfortunately, because we’ve learned to incorrectly separate happy and sad feelings, and to discourage the expression of the latter, we’ve madea significant portion of our feelings out of bounds. One result of that emotional inequity is that we’ve also learned the bad habit of responding to sad feelings from an intellectual perspective.

On the other hand, we never try to convert other people’s happy feelings into their intellects, only the sad or scary ones. That makes no sense when someone is trying to tell us about a feeling. You must apply some diligence to develop this new habit of really hearing what is being said. The comment, “I’m really scared that Joey’s having a hard time,” is a very clear and honest statement of feeling. It is not a call for an opinion or advice.

At the very least, you must acknowledge hearing your mate. If you have a “me too” to add, by all means do so. But never contest or argue with a feeling.

CREATING A “NO- ADVICE” ZONE

In today’s world it’s often true that both parents work in jobs outside the home. As the divorce rate indicates, this can add emotional pressure to marital relationships. In families with one or more children with hemophilia, it is not uncommon for one of the parents to be the full-time, hands-on care provider for the children, while the other is out there in the work-day jungle. The at-home job, while different from the one outside the home, is equally pressure packed and exhausting

As the returning worker needs to debrief his or her day, so does the stay- at-home worker, who may have been dealing with emotional forces that expand the boundaries of reason and patience. Different jobs can never be compared, so it can never be presumed that one set of pressures is worse than another.

Both sides of the communication spectrum must be present for each partner to benefit. Telling the truth about the events and feelings that affected your day is not possible if your partner doesn’t listen or hear effectively.

The obvious solution is that both partners need the opportunity to safely spill out the good, the bad, and the sometimes ugly, that affected their day. Telling the truth and being heard is the only way to avoid loading up a time bomb that will explode on you when you least expect it.

PRACTICE, PRACTICE, PRACTICE.

Make a pact with yourself not to offer unsolicited opinions or advice. They almost always rob the other person of dignity. Here’s a little trick to help you develop the new habit. If your mate [or child] has told you something, especially about their feelings, and hasn’t asked a question, don’t offer an opinion or give advice.

Practice listening to feelings without offering solutions that weren’t requested.

However, as you listen, you might be bursting to tell them what you think about what they said or how they feel. If so, you can ask this, “I have an opinion about that, would you like to hear it?” If they say “yes,” by gosh, you can tell them what you think. If not, you no longer have an opinion. It’s that simple.

People often tell stories that are wrapped around the feelings they are trying to communicate. The most important parts of those stories are the feelings they contain.

Practice listening to the “heart line” not the storyline.

We know it’s one thing to tell you to do something and another to tell you how to do it. Here are some tips that will help you hear your mate and your children better.

• Listen with your heart, not your head. Allow all emotions to be expressed, without judgment, criticism, or analysis.

• Recognize that feelings are emotional, not intellectual. Feelings do not need to be understood, just expressed and heard.

• Avoid the trap of asking, “What’s wrong?” The automatic response is “Nothing.”

• Go first. Instead of asking someone how they feel, tell the truth about your own feelings. That will create safety for the other person to open up.

• Be patient. Don’t force others to talk about feelings.

• Never say “Don’t feel sad” or “Don’t feel scared.” Sadness

  and fear, the two most common feelings attached to loss of any kind, are essential to being human.

Who knows? Maybe they’ll hear your heart too.

Russell Friedman is Executive Director of The Grief Recovery Institute Educational Foundation, and co-author of The Grief Recovery Handbook, When Children Grieve, Moving On, Moving Beyond Loss, and The Grief Recovery Handbook for Pet Loss . Please visit the website at: www.griefrecoverymethod. com, which features many articles on Grief Recovery.

Everybody Gets to Have a Bad Day Once in Awhile

Published: LifeLines for Health, vol. 5 (Summer 2015)

by Dr. Gary McClain, PhD

Our family members can certainly be a joy. Except when they’re not. In the right place at the right moment, even someone you love can seem like a pretty bad person, like when a family member:

• Accuses you of not holding up your end on the household chores, when you’re doing the best you can

• Tells you to “just think positive” when you try to talk about the challenges you’re dealing with

• Criticizes you for neglecting some aspect of taking care of a family member – or yourself – without understanding what really happened

• Just plain ignores you

When one member of the family is living with a chronic condition, everybody in the house is living with it because everybody is affected. And dealing with the challenges of a chronic condition can put your emotions on edge. Especially those days when you don’t feel so well, or when you’ve had yet another problem to solve, or when you feel like you’re spinning your wheels and not getting anywhere.

When you’re feeling on edge, a supportive family member can makea positive difference in your life by giving you the encouragement you need to have a better day. A smile, a few caring words, an offer to give you a helping hand... Who doesn’t feel better when a little love is tossed in their direction? And after all, isn’t that what you do for everyone else?

On the other hand... some days, family members aren’t able or willing to provide that encouragement and, instead, say something angry, or hurtful, or just not seem to care at all.

“Wow! I thought you loved me! What happened!”

So if you are having one of those dark cloud days – and so is your family member – your cloudy day and their cloudy day on the same day equals the perfect storm. And when the storm hits, all you can see is what’s in front of you. Something relatively small – like the actions of a family member – may suddenly look very large. So large that, in fact, not only are their actions magnified, but so is the impact of these actions on your day. Those words of impatience may feel like the harshest thing they could ever say to you. Or, not noticing that you need some help may feel like the ultimate rejection. How could you possibly be this way!!!

What’s important to consider is that turning your loved one into a bad guy doesn’t make you feel any better, or at least not for long. It just gives you a target for your frustration. Along with an excuse to let your feelings bubble up and boil over, and shove reason and rational thinking off into the corner. You end up feeling that all of that negativity is justified. That means more suffering, and stress, for everybody in the house!

Making a family member the bad guy can drive a wedge between the two of you. You risk damaging a relationship with someone who plays an important role in your life!

So... when you’re having one of those days when your reactions to other people are a little over the top, here are some ideas to consider:

Take a step back and look at the situation objectively

Yes, our loved ones do things that disappoint us or make us mad. But the frustration or anger or disappointment that you are feeling may be part ofsomething much bigger, something going on with you. The people who are closest to us can also be the closest target for our frustration. Is it your family member, or is something else bothering you?

Try to identify what button is being pushed

When someone isn’t very helpful, or is unkind, we can be remindedof all the other times in our life when people weren’t very helpful, or treated us poorly, or bullied us. And feel that pain again. And when we are feeling this way, old resentments that we feel toward a loved one – resentment that we thought we had left in the past – can suddenly bubble up. Yes, it’s about that person, but it might also be about a lot of other people in your past. Do you see the pattern? Is there something that the two of you need to talk about and resolve? Or is it something that you need to do some more work on letting go of?

Stand back and get a wider view

Your family member’s current behavior may stick out like a sore thumb, but isn’t there more to the relationship than this moment in time? What do you most value about your relationship? What do you most admire about them? Recall a time when your family member was there when you needed them. Or a fun time that you enjoyed together. Or the loving manner in which they treated you yesterday. In other words, look at the big picture.

Consider the possibility that someone else is also having a bad day

It’s only human to have expectations for the people in our lives who are closest to us. But let’s face it; people don’t always meet our expectations. Your loved one may have something going on that they aren’t ready to share, or don’t know how to share. Is there anything you can do to make their day better?

Keep in mind that time doesn’t always heal all wounds

When someone close to you disappoints or angers you, it is easy to react by cutting them off. But when we stop communicating with someone, our minds have a way of rewriting the story, making the wound that much deeper, and turning a misdemeanor into a major crime. How about getting the communication going again, maybe starting out with making a kind gesture of your own, or offering to talk things out. Don’t let a tiff turn into a tragedy.

Do what you can to keep the communication going

Accept what you can’t do. Some family members may be unable or unwilling to be supportive, or at least as supportive as we need them to be. Expand your social network by bringing more supportive and caring people into your life. Let’s give everybody in the house some breathing space, starting with allowing each other to be human. After all, we are all in this together!

Gary McClain, PhD, LMHC, is a therapist, patient advocate, and author, specializing in helping clients deal with the emotional impact of chronic and life-threatening illnesses, as well as their families and professional caregivers. He works with them to understand and cope with their emotions, to learn about their lifestyle and treatment options, to maintain compliance with medical regimens, to communicate effectively with the medical establishment, and to listen to their own inner voice as they make decisions about the future. His email is: gary@JustGotDiagnosed.com. He welcomes your questions and comments.

504 or IEP Making Sense of It - All!

Published: LifeLines for Health, vol. 5 (Summer 2015)

by Janet Brewer, M.Ed

There are two federally mandated plans that all school age students are entitled to. States also are mandated to provide special education services or related services and accommodations to children with a diagnosed disability.

IDEA-Individuals with Disabilities Education Act- 1974 Amended 2004

IDEA requires states to provide a “free appropriate public education” to children with disabilities so they can be educated to the fullest extent possible with other children. If qualified, children are provided with special education AND related services under an Individualized Education Plan.

Disabilities Include:

• Physical, sensory, mental or emotional • Emotional Disturbance
• Orthopedic Impairment
• Hearing-Vision Impairment• Autism• Traumatic Brain Injury
• Other Health Impairment
• Intellectual Disability
• Specific Learning Disability
• Multiple Disabilities

If your child is diagnosed with any of the above disabilities AND they require specialized instruction-they qualify for an INDIVIDUALIZED EDUCATION PLAN.

Specialized instruction is defined as adapted instruction designed to meet the unique need of the child with a disability. The content, methodology or delivery of instruction is changed to ensure the child’s access to the general curriculum.

Section 504 of the Rehabilitation Act of 1973

This Act’s focus is on non-discrimination. It maintains “no otherwise qualified individual with a disability will be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance”.

American with Disabilities Act 1990

ADA is almost like an extension of Section 504. It provides for the elimination of barriers related to accessibility for the disabled to buildings, transportation, and communication.

Both 504 and ADA provide related services and accommodations to qualified individuals with a disability through a 504 plan. Its intent is to provide access or remove barriers
to participation. It provides students with the same rights and services as their “NON Disabled Peers”.

How a Bleeding Disorder Fits In:

IDEA-Other Health Impairment

IDEA defines Other Health Impairments as due to chronic or acute health problems such as asthma, attention deficit disorder, crohn’s or hemophilia and adversely affects a child’s educational performance.

ADA/504-Medically Related Disability

ADA/504 defines a Medically Related Disability as a physical or mental impairment that substantially limits one or more major life activities or those basic activities that the average person in the general population can perform with little or no difficulty. The individual has a record of such impairment and is regarded as having such impairment.

How Does My Child Qualify?

If there are NO academic, behavior or emotional concerns:

Make an appointment with your building principal/ADA coordinator, teacher (s), and school nurse and ask to develop a 504/ADA plan.

If there ARE academic, behavior or emotional concerns:

Write a letter to your child’s teacher asking for a formal evaluation process stating your concerns and submit it to the school. The school has an obligation to complete all assessments in the areas of suspected disability (ies) within 60 calendar days.

When assessments are complete:

1. A meeting will be scheduled

2. Reports will be shared with you regarding your child’s abilities

3. The Student Assist Team will then decide if your child: 

a. Has a disability
b. Requires specialized instruction in order to make process

What are Related Services?

Related services may include:

• Speech/language therapy
• Audiology (hearing loss)
• Psychological
• Physical/Occupational therapies
• Counseling
• Rehabilitative counseling 
• School health services
• Transportation

For Example:

If you are comfortable with your school district’s physical therapist then PT could be included on your child’s ADA/504 plan and they could receive physical therapy during the school day. Providing the therapist with additional information on physical therapy with an individual with hemophilia will probably be necessary, as well as contact information from the ordering physician to be sure the therapist proceeds slowly.

What Accommodations Can Be Provided?

Reasonable accommodations are provided to remove barriers related to access. For example: If your child is on crutches, ambulating safely in the hallway is a barrier. Allowing extended travel time around the building removes that barrier. An extra set of books to prevent a heavy backpack and subsequent shoulder bleeds. A locker that is accessible from a wheelchair at the end of the row is more accessible.

Maintaining open and honest communication with your school district enables your child to be more successful. Stating your needs in a detailed, positive manner yields better results. Most school districts are very responsive, but they are working with tight budgets and are often understaffed. Letting them know that you appreciate their efforts on behalf of your child goes a long way. Also remember, there may come a time that your child may not want these accommodations such as leaving early from class while on crutches or a wheelchair as it calls unwanted, sometimes intrusive attention. More than anything, our children just want to fit it. Let them make those decisions. Their social interactions with peers are just as important, if not more important than leaving class early. Or, there are times that it is ok to “play the hemophilia card” and invite a special friend or attractive classmate to push their wheelchair or carry their books!

Sources: Federal Regulations Part 300

Is It Time to Be Kind to Yourself? Ten Steps Toward Self-Compassion

Published: LifeLines for Health, vol. 6 (Winter 2015)

by Dr. Gary McClain, PhD

“You knew that would happen!” “Can’t you do anything right?” Or how about: “Idiot!”

Who’s saying all those mean things to you? Most likely, your own harshest critic. YOU!

We human beings sure can be tough on ourselves. Pointing out our own mistakes. Our misjudgments. Anything we do that falls short of a demand we didn’t meet. All too often demands we created for ourselves and that weren’t realistic in the first place.

And just where does that critical voice come from? I suspect it’s a voice we hear
as children, maybe from parents who criticized and scolded when we were judged as not having met the demands that were placed on us. Or teachers. Maybe other kids. Somewhere along the way we learn that when we make a mistake, or can’t quite perform as well as someone else thinks we should, we’re going to hear about it. Often with some pretty harsh words.

Sure, criticism can make us better. That’s probably what was behind all that criticism that came your way as a child. Or at least that’s what you were told.

Turn Off the Self-Criticism and Replace It With Kindness

But what happens is that, as we become adults, that baton magically gets passed to us. And unfortunately we latch onto it. By doing so, we invite those critical voices into our minds, and give them free reign to sound off at will. And do they ever take advantage of every opportunity! While compassion for ourselves gets pushed off into the corner.

If you’re living with a chronic condition, or have a family member with
a chronic condition, you know about demands. The chronic condition places all kinds of demands on you, every day, even throughout the night. And with each demand, another reason to be hard on yourself when your performance doesn’t quite measure up.

Let me ask you something: Have you ever thought about the toll it takes on you when the person in the mirror always has a good scolding at the ready, just waiting to unleash it? That’s a lot of pressure to live with. And another question: Is it possible that you might be demanding a little too much of yourself in some areas of your life? And how about this: Is all the scolding the only way you have to keep yourself motivated?

You’ve heard that expression, with friends like you, who needs enemies? So I have to ask: Are you being a friend to yourself? And I have to add something here. When you’re that hard on yourself that becomes your view of the world. And that can translate into being hard on other people, too.

Compassion starts with being kind to yourself. Here’s how to get started.

SET PRIORITIES

Sit down with yourself and think about what you really need to do to take the best possible care of yourself. Focus on the basics, what you need to do to maintain your optimal health, physically, emotionally, and in your relationships. Make a list. And a schedule. These are your priorities. (And don’t forget: If you are taking good care of yourself, you are all that more able to take care of others.)

REMINd YOURSELF THAT NOT EVERYTHING IS A CRISIS

One of the best ways to give yourself a rough time is to look at anything less than perfection as an absolute catastrophe and then make yourself at fault. Take a step back and consider the situation. Let’s say you slipped up on your compliance, or made a mistake in judgment. Is this something that can be fixed? Do you know how to get things back on track? And if not, is there someone who can help? All that energy spent on self-criticism can be channeled toward finding a solution.

FOCUS ON THE BIG PICTURE

Who knows, you may even decide that what felt like a crisis at the moment was only a bump in a much longer road. What a relief, right?

LOOK FOR THE LESSON

Here’s where you have a choice. You can look at a mistake or a setback as a reason for punishment, and call yourself lazy, stupid, etc. Or you can turn this into an opportunity for learning. Try this: “Oh, so that’s what happens if I.... At least I know how to avoid this problem in the future.” And then move forward, that much more educated.

WATCH YOUR SELF-TALK

We spend our waking hours talking to ourselves. Evaluating, predicting, explaining... judging. And it’s that judgment talk that can make us very unhappy. So be more aware of your self-talk. When you feel the critical voice gearing up to let loose with a good old scolding, tell him/her to be quiet. And then engage that kindly, compassionate voice that’s been cowering in the corner for too long.

GIVE YOURSELF A BREAK

Ask that voice of kindness for a little pep talk. Remind yourself: “I’m human. I’m trying hard. This is not an easy road. And I am doing the best I can, even if not everything I do is perfect.” Having trouble conjuring up that voice? It might help to sit down with a sheet of paper and do some journaling. Give yourself a positive self-talk script you can read when you need a lift. Try some affirmations. Start out with: “I am a work in progress. I get better every day.”

AND LET YOURSELF FEEL

One of the ways we punish ourselves is by telling ourselves that we shouldn’t be feeling the way we feel. But there is no right or wrong way to feel. So as emotions come up, don’t swallow them. Let yourself feel, whether that judging voice approves or not. Sad, mad, afraid. It’s all part of being human. That’s being kind to yourself.

REPLACE PUNISHMENT WITH REWARDS

Chances are, if you are letting loose on yourself with that critical voice, you may also be punishing yourself in some way. Avoiding people. Not doing things you know you would enjoy. Pushing yourself to overwork. What if you gave yourself some rewards when you meet an expectation you have for yourself? This is a way to shift your focus to what’s going well, and to give yourself some encouragement to keep up whatever you’re doing that got you there. Indulge in something you enjoy that promotes your wellness, a little break, a favorite activity, some fun with a loved one. You deserve it!

LET SOMEBODY HELP

Limit your time with people who take away the need to criticize yourself because they are so good at doing it for you. Instead, try to surround yourself with people who bring out the best in you. Be kind back. Kindness leads to more kindness. And it sure feels a whole lot better than criticism!

SMILE AT YOUR IMPERFECTIONS

Nobody’s perfect. Now, how do such imperfect people manage to dress themselves in the morning? It’s a mystery. We’re all so imperfect that we just have to shake our heads and laugh at ourselves sometimes. How’s that for lightening up?

You’re dealing with a lot. So how about giving yourself credit for doing the best you can? Show yourself some compassion. And some love while you’re at it. Be kind to yourself.

Gary McClain, PhD, LMHC, is a therapist, patient advocate, and author, specializing in helping clients deal with the emotional impact of chronic and life-threatening illnesses, as well as their families and professional caregivers. He works with them to understand and cope with their emotions, to learn about their lifestyle and treatment options, to maintain compliance with medical regimens, to communicate effectively with the medical establishment, and to listen to their own inner voice as they make decisions about the future. His email is: gary@JustGotDiagnosed.com. He welcomes your questions and comments.

504 Plans: When Good Plans Go Wrong, Part One

Published: LifeLines for Health, vol. 6 (Winter 2015)

by Janet Brewer, M.Ed

So, you have worked closely with your school’s team to develop a carefully crafted 504 accommodation plan for your child (and if you haven’t, do so!) The accommodations seem reasonable and the school has agreed it is their responsibility to make sure it is followed across all content areas, including specials. Everything seems to be going fine then, ROAD BLOCK - your child is struggling.

Some potential struggles:

• The substitute doesn’t let your child go to the nurse if s/he is in pain resulting in a bleed that takes longer to recover.

• Your child is told they “can’t go out for recess because it is too dangerous.”

• Your child’s class is going on a field trip and your child is told s/he can’t go because “they can’t provide a nurse, or the building isn’t wheelchair accessible, or it might be too risky.”

• The second semester teacher won’t provide your child with an extra book saying, “there aren’t enough.”

The list of reasons, aka “excuses”, could be endless! By now, you probably get the picture and most likely have dealt with at least one these scenarios or a more severe scenario! (I have heard many of your stories and they make me shudder). Each of these examples is a violation of your child’s civil rights. Yes, civil rights. Remember, a 504 accommodation plan is developed under the Americans for Disabilities Act, a federal law designed to remove barriers, prevent discrimination and to provide your child the same experiences as every other child in their classroom, school or school district.

Section 504 of the Rehabilitation Act of 1973

This Act’s focus is on non-discrimination. It maintains that, “no otherwise qualified individual with a disability will be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance”.

In addition, the Office for Civil Rights also has responsibilities under Title II of the Americans with Disabilities Act (http:// www2.ed.gov/about/offices/list/ocr/disabilityoverview.html) of 1990 (ADA) that prohibits discrimination based on disability in any program or activity operated by recipients of federal funds and prohibits discrimination based on disability by public entities, regardless of whether they receive federal financial assistance. This may have the potential to apply to children who are in private school (http://www.ada.gov/t2hlt95.htm).

Americans with Disabilities Act 1990

ADA is an extension of Section 504. It provides for the elimination of barriers related to accessibility for the disabled to buildings, transportation, and communication.

Both 504 and ADA provide related services and accommodations to qualified individuals with a diagnosed disability through a 504 plan. Its’ intent is to provide access or remove barriers to participation. It provides students with the same rights and services as their “NON Disabled Peers”.

What does this look like?

If your child’s friend Sean can go on a field trip or play on the playground, it is the school’s FEDERAL obligation to provide the related services and accommodations so that your child can participate in the same activities. What is available to one student is available to all! Equality!

The Office for Civil Rights is the governing body whose mission is to ensure equal access to education and to promote educational excellence through vigorous enforcement of civil rights in our nation’s schools. A complaint of discrimination can be filed by anyone who believes that an education institution that receives federal financial assistance has discriminated against someone on the basis of race, color, national origin, sex, disability, or age. The person or organization filing the complaint need not be a victim of the alleged discrimination, but may complain on behalf of another person or group. (http://www.hhs. gov/ocr/civilrights/complaints)

Examples of the types of discrimination prohibited include inequitable access to educational programs and facilities, denial of a free appropriate public education for elementary and secondary students, and refusal to implement or inappropriate implementation of academic adjustments in higher education.

The HOPE is that you never reach a point where you need to contact the Office for Civil Rights. If you feel as though the accommodations or related services in your child’s 504 plan are not being provided, you must act in a calm, controlled manner to rectify the situation by:

1. Speak with your child’s teacher. There is
   a “chain of command” that is an unspoken tenant of most school systems. The first point of reference is the classroom teacher (at lower grade levels). If your child has more than one teacher, you may want to contact the 504 coordinator. If you remain unsatisfied, the principal would be next.

2. Schedule a meeting with the building principal and outline your concerns. Remember, documentation is your friend! Keep a notebook, document all conversations with a date & time stamp and always keep your email communications!

Keep in mind, stay calm, be professional and always refer to the situation as a team approach! “How will we as a TEAM provide the services to my child with a disability to be successful?” If you continue to encounter resistance, inform the principal that you will be speaking with the district’s ADA coordinator and/or superintendent.

Schedule your meeting with the ADA Coordinator and use your notes and an open communication style. Explain why you believe your child’s rights are being violated. Make it clear that you have exhausted all steps with the school district and have no recourse but to contact your local Office for Civil Rights. In the majority of cases, the situation will be rectified at the level of the OCR, ADA Coordinator, or Superintendent. The school district will be subjected to an investigation by OCR that could potentially reduce federal funding for the school district.

Who Takes Care of YOU? Winter 2015 Feature

Published: LifeLines for Health, vol. 6 (Winter 2015)

By Janet Brewer, M.Ed

As I write this now in November, National Caregivers Month, I have some time to reflect on the multiple years I have spent (and still do) as a caregiver. Within our community, we are bombarded with information on factor products, maintaining a healthy lifestyle, healthcare and insurance changes; the list goes on and on. But where are the articles and information on how to manage your emotional and physical health when you are the primary caregiver of a child with a bleeding disorder and an inhibitor? It makes “just having hemophilia”, look like a cakewalk. This isn’t to depreciate their daily struggles, but what all of us would give to be back in the “just hemophilia” crowd. As we all know, inhibitors are a totally different diagnosis.

IDENTIFYING AN EPIDEMIC

“Caregiver stress is defined as the emotional strain of caregiving”1. The impact of caregiving effects us economically, physically, and emotionally. Not to mention the effects it has on our jobs and our relationships. The statistics are as overwhelming as we are overwhelmed.

The National Center on Caregiving indicates that an estimated 59%-75% of caregivers are female. Females spend 50% more of their time providing care than men. Working women caregivers are likely to suffer a higher level of economic hardship due to caregiving. Most caregivers are employed. Among baby boomer caregivers (aged 50-64 years old), an estimated 60% are working full- or part-time. With these statistics it is no wonder these women are stressed out. They are often juggling their own work schedule demands; their child’s caregiving demands and many are taking care of their elderly parents as well. This often involves using personal days, sick days or vacation time to schedule appointments or when their loved one is in need of treatments or if they are ill (if they are fortunate enough to have a job that provides paid time off). Working women caregivers may suffer a particularly high level of economic hardships due to their caregiving.

The impact on the physical and mental health of the caregiver takes its toll.1 A number of studies have found that female caregivers are more likely than males to suffer from anxiety, depression, and other symptoms associated with emotional stress due to caregiving. As many as 20%-50% of caregivers report depressive disorders or symptoms. Caregivers use more prescription and psychotropic drugs than non-caregivers.1

While researchers have long known that caregiving can have deleterious mental health effects for caregivers, research shows that caregiving can have serious physical health consequences as well. Studies have shown that caregivers may have increased blood pressure and insulin levels, may have impaired immune systems and may be at increased risk for cardiovascular disease among other adverse outcomes.

HITTING CLOSE TO HOME

Reflecting on these statistics leaves me not only staggered, but all too aware that care-giving is now a big part of my identity. Do these statistics sound all too familiar to you? Has caregiving now become your identity? When we have children, our identity is forever linked with our child’s, “Oh, you’re Robert and Edward’s mom.” Our endless “To Do” List looks like anyone else’s, until you add a chronic illness. We are in serious caregiver stress territory. So a show of hands please (be honest now):

Do you put off your own health and emotional needs to care for a loved one? Studies show that by doing this we often end up feeling angry, isolated, and anxious.

• Do you have problems sleeping or want to sleep all the time?

• How are your eating habits-have you lost or gained too much weight?

• Are you tired or feel like you have no energy?

• Have you lost interest in activities that you used to enjoy?1

• Do you feel the need to control all aspects of yours and your loved ones lives?

• Do you even remember the activities that you used to enjoy?

• Do you turn down offers for help, even from your family members or your partner, further isolating yourself and establishing your identity as “THE CAREGIVER”?

Many of us are well acquainted with these truths. Honest answers to these questions may help you to recognize the impact caring for your loved one is taking on you. Identifying, acknowledging, and embracing the role you play, as the family caregiver is the first step to creating a more balanced life.

Now the hard part... how do we learn to create a space where caregiving doesn’t become your reality?

Accept that your family member has a chronic disorder. Their diagnosis will affect you too and it is understandable to feel upset, angry, disappointed and maybe even helpless at times. Know that you must allow yourself to go through a grieving process as your hopes and dreams for your child or loved one is now very different than what you anticipated. It is perfectly appropriate to express these feelings and recognize that this may put a dent in your future activities, or plans. While you absorb the feelings of those around you, don’t forget to acknowledge that as a caregiver you have emotions as well and you may not be able to fix other’s feelings. And sometimes, it might be better to let them figure out some of them with someone else rather than you.

DO YOUR HOMEWORK

As the primary caregiver, you will learn unfamiliar and out of the ordinary things; like gauze soaked in black tea can help with oozing teeth. High school biology had nothing on what we need to learn! Ensure that you are aware and well- versed on your loved one’s diagnosis, severity, recommended product, as well as all product choices available to you, treatment protocols, physician/HTC information, and medical alert identification. Educate yourself, read everything provided to you and seek out more information. Search the web, find and attend support groups, educate members of your extended family so they may be a source of support for you.

Insufficient knowledge breeds fear! What we don’t understand is scary. Arming yourself with as much information as you can helps to mitigate some of the fear and allows you to take back control. Know that you are not alone; your feelings are NORMAL and try not to be afraid. Fear paralyzes us. There is hope that you can and will balance your life. Recognize that you ALSO are affected with all the same mentally, physically, socially and spiritually. The active role that you will now play in their life is truly a gift that requires openness of the mind and willingness of the heart. It is important to note that caring for another person can also create positive emotional change.

Aside from feeling stress, many caregivers say their role has had many positive effects on their lives. For example, caregivers report that caregiving has given them a sense of purpose. They say that their role makes them feel useful, capable and that they are making a difference in the life of a loved one.2

COMMUNICATE, COMMUNICATE, COMMUNICATE

Communication is the single most important way to learn anything. Communication will make a situation with no possible resolution seem easier to figure out. As the caregiver, part of your role is to communicate with your affected loved one in a positive manner. They need to know they have an outlet, but be aware of how many roles you may play in your loved ones’ life. Trying to fill too many roles are detrimental to both of you. Initially, it will be your role to explain to the doctor and other health professionals what symptoms they might be experiencing, as well as sharing your observations and thoughts. Remember to allow your loved one to express their own symptoms and care as often as possible. The medical staff is only as good as you help them to be in treating your specific disorder. If you have questions, ask. If you have a difference of opinion or information that you have learned from outside resources, respectfully share this with the physician. As the caregiver, you become the expert as you live your daily life with your loved one’s disorder. Teaching and modeling these skills for your child will allow them to become successful adults who will be better equipped to manage their own care.

The second part of communicating is to ask for what you need from your spouse, significant other, trusted friend, or family member. Try to remember that those around you care about you and in most circumstances, genuinely want to help. They won’t know what you need unless you tell them. When we are in the middle of a crisis, we don’t even know what we need. Our mind is flooded in crisis mode, making it difficult to communicate. When the dust settles, reflect on the crisis and write a list of tasks that others can do for you... Meals? Picking up other children? Someone to sit beside your child or loved one at the hospital so you can take a shower? Write these needs down or put them in a chart so that when someone asks during the next crisis (and there will be another one), you can easily hand it to them.

When we are stressed or overwhelmed, it is so easy to develop a mind set that it is easier to do it yourself rather than going through the steps of explaining what is needed. By adopting that mind-set, two negative things occur: you shut out the very people who are trying to help you which makes them feel inadequate and less willing to provide assistance in the future, and you become more angry and resentful. By opening lines of communication and letting others help you, you allow them to feel good about themselves and deepen the relationship between yourself, the other person, your loved one and your family. As Barbra Streisand once sang, “People who need people are the luckiest people in the world.”

TAKING CARE

Taking care refers to not only the loved one with the bleeding disorder, but treatment of the individual who
is caring for them. If you don’t take care of yourself, who else is going to do it? The equally important question is, if you become unable to perform the “duties” of caregiver, who is going to take care of your loved ones? The best gift that you can provide your loved one is an emotionally, spiritually and physically healthy you. “The research is very clear; the affect of stress on
the family caregiver has been shown
to affect our immune system making us more prone to chronic illness ourselves.”3

Depression and anxiety can affect our ability to not only make informed decisions, but it affects concentration, stamina and the ability to function on a daily basis. Left undiagnosed and untreated it may impact our overall desire to live. Putting yourself first is not selfish; it is self-less. The relationship and bond you have created with your loved one is one of complete trust. They trust you to always be there when they need you; taking time to do something relaxing for yourself affords you the opportunity to return more energized and relaxed. It also serves as a way for them to see you as a person beyond themselves. This in turn affects their perception of themselves.

FINDING RELIEF

So how do you work on your treatment? First and foremost –

Be flexible. Bleeds and injuries happen and they usually happen at
the worst possible moment. Holidays, planned activities, and family gatherings are the most popular times! Modeling flexibility creates resiliency in a family. If someone is laid up with a bleed and the family can’t go to grandma’s to celebrate that big birthday, why not switch the party to your house? Remember, it’s about spending time together, where you spend it isn’t important.

What lesson will they take from the party coming to your house? That family and loved ones care enough to make sacrifices for the greater good.

Keep your priorities straight. 

Is it more important that your home looks like something out of a home and garden magazine when everyone comes to celebrate grandma’s birthday at your house in our above example? No, life happens on a daily basis, which includes a house that may not meet everyone’s standards. We need to remember as caregivers not to allow our own guilt to bleed into what we think others are thinking of us. I once saw a sign that read, “If you came to see me- great! If you came to see my house, make an appointment.”

Organize your day. 

Sometimes in the most stressful of times, we look at the whole of a day and get so overwhelmed it can be paralyzing. Break your day down, if you can only get through ten minutes at a time, so be it, concentrate on getting through those ten minutes. Then, take a deep breath, pat yourself on the back and get through the next ten minutes or maybe the confidence you gained from managing those ten minutes will inspire you to tackle twenty minutes!

Banish the phrases of “What if ” or “I could/should” from your vocabulary. Dealing with what IS can be more than enough to deal with. The here and now is the reality, not what MIGHT happen or what COULD have happened or what SHOULD have happened. My children used to ask me “What If ” questions all the time when they were younger and my response was, “I can only deal with what is”. We often spend our days trying to protect our child from that next bleed, when the reality is-they bleed. Spontaneous bleeding is the reality for individuals with hemophilia and an inhibitor, so if they are going to bleed doing nothing, why not at least try to let them enjoy life a little (within acceptable limits of course!) Stressing over what we can’t control only creates more stress.

Exercise - even if it is only doing some type of physical activity for ten minutes, three times per day. There
are 24 hours in a day; we spend about 16-17 hours of them awake. How is it not possible to find at least 10 minutes for yourself in there somewhere? Hide in the bathroom. Walk through your neighborhood with your child in a stroller, wagon, or wheelchair. It will be good for both of you. Can’t get outside? Power walk through or around your house, run up and down the stairs, jump rope in your kitchen, tackle the chores you can that day with a little more zest. Do a body scan. Are your shoulders up around your ears? Teeth clenched? Muscles tight? Take those ten minutes to sit upright in a chair by yourself and mindfully will those muscles from the top to the bottom to unclench. And if that doesn’t work there is always chocolate!

There are two types of rice, and I’m not talking about the brown and white varieties.

• Loved ones need RICE when a bleed occurs.

  - Rest, Ice, Compression and Elevation

Successful caregivers need RICE too. - Rest, Inspiration, Compassion and Energy

So while they’re resting on the couch, you rest too. Pop in a movie, rock out to your favorite music, read a book, take a nap, practice yoga, mindfulness or simple breathing exercises to help you refocus and relax. (Refer to LFH Winter Volume 4: Exploring the Science of Mindfulness). Start a journal, writing down your thoughts and feelings give you the opportunity to release and let go of them. Practice gratefulness. Each day find three (3) things you were grateful for in the day. Studies show that after just one month of doing this, you will become a bit less stressed and a happier person. “I’ve been able to show that fear closes down our minds and our hearts, whereas positive emotions literally open our minds and hearts... they really change our mind- sets and our biochemistry” Dr. Barbara Fredrickson Professor of Psychology, University of North Carolina3 http://www. actionforhappiness.org

Speaking of biochemistry, don’t be afraid to seek out professional help for yourself or your loved one, or both. Whether you make an appointment with your spiritual advisor or a trained counselor, there will be times when the stress of your daily lives can and will overwhelm you. There is no shame in seeking an outside, unbiased professional to let all of those feelings out.

Anger, frustration, resentment and despair are all naturally occurring emotions as your family attempts to cope on a daily basis with the challenges of chronic illness. Sometimes it is better to discuss those feelings outside of the home where words cannot be misinterpreted. Be sure that you and your loved one are seeing different professionals or allow separate time for each person to speak privately. Sometimes, we may need more than a counselor. Remember our statistics show that 20%-50% of caregivers report depressive disorders or symptoms? Stress changes the neurotransmitters in our brains, so it would make complete sense that you or your loved one may need to speak to your doctor(s) about using a medication to treat those symptoms. Some may need it long term, some for short term. A word of caution; never go off of these prescribed medications without your doctor’s knowledge.

Find a friend. As a member of the inhibitor community you are part of one big family. Inhibitor Summits provided by NHF, Inhibitor Family Camp, Leverage and Momentum provided by Comprehensive Health Education Services provide opportunities to share, relate and have fun. Find a person or family that you connect with. Face Time, Skype, become friends on Facebook, Twitter or whatever social networking method works for you. We are living in a society that is sometimes overwhelmingly connected. Reach out. The whole process of sharing and caring is a two way street. Allow the support you receive from the community to empower you to remember that you control the bleeding disorder, it doesn’t control you!

There are numerous challenges to providing our loved one optimal care but we can be successful when we prioritize. Keeping ourselves healthy and organized puts us in a better position to care for our love ones. Therefore, by eliminating room for stress we make space for the success and rewards of being the caregiver so that it doesn’t become our identity.

ABOVE ALL ELSE, maintain a sense of humor; you won’t get through this without one! Many of us have developed some really quirky (but necessary senses of humor!) As a family that deals with chronic illness on a daily basis, you may need to dig deep sometimes to find something to laugh about. Is it possible to look back at the annual Christmas picture when your child had a black eye and shake your head and laugh?! It will just become part of your family’s norm and it makes a great story to tell! Bruises, needle sticks, infections, bleeds and hospitalizations are part of our “normal”. By taking a deep breath and finding that “silver lining in the cloud”, over time, you’ll and your loved one’s ability to cope and become resilient.

1 Source: U.S. Department of Health and Human Services, Informal Caregiving: Compassion in Action. Washington, DC: 1998, and National Family Caregivers

Association, Random Sample Survey of Family Caregivers, Summer 2000, Unpublished

2 Source: Medicinenet.com, Caregiving. http://www.medicinenet. com/caregiving/article.htm

3 Source: Action for Happiness: Take Action, Find Three Good Things Each Day. http://www.actionforhappiness.org

Inhibitor Family Camp at the Painted Turtle Milestones

Published: LifeLines for Health, vol. 7 (Spring 2016)

Written by: Carri Nease

Our family first attended Inhibitor Family Camp in 2012 when the boys were six (6) after patiently waiting since we preregistered them at the age of four (4)! We didn’t know what to expect, but we were all very excited.

After a LONG Trip, we arrived at The Painted Turtle.

This would be the first weekend we had ever walked away from our boys and not worried about them (much). The camp pairs a family with a volunteer family pal who provides a second pair of hands keeping track of the kids so that the parents can have breathing room to attend sessions while the kids can run off and participate in LOTS of activities. Camp was teaching us it was okay to let go and let someone else take over for a bit.

It felt good knowing that for the most part, camp was set up for pretty much anything we could throw at them on a normal day with hemophilia and inhibitors. Inhibitor Family Camp has only gotten better over the years since our first arrival. Comprehensive Health Education Services, with an education grant supported by Novo Nordisk, increased the camp weekend by one day, which allowed us to actually recover some from the travel and enjoy the feel of the festivities and more.

This year, we weren’t sure if we would be able to attend. Tyin was having a particularly rough time and we weren’t sure if he would be healthy enough to make the trip. He worked hard though, and physical therapy cleared him so we could make it.

Tyin walked and played more this weekend than he had in the past several months because of the activities and encouragement of friends. We had so much fun!

help of nurses Kathy Byrne and Brianna O’ Neil (who are members of CHES’ traveling infusion nursing team) and The Painted Turtle’s Well Shell staff. Tyin was able to infuse himself for the second time and Connor worked through his fear to get nearly to the point of his first stick! He actually managed to hold the needle and touch where he would have infused. This is a huge step for someone with a deep needle phobia.

Connor also performed with a camp buddy in the talent show - another huge milestone!

Registration was a bit of a challenge but it is always worth it.

As a parent attending Inhibitor Family Camp, I get the strength and support I need, both from the other parents AND from the CHES staff and The Painted Turtle staff including the Well Shell Staff.

Inhibitor Family Camp is the one event we look forward to each year where the kids are able to hang with kids like themselves. It helps them to hear that they are not the only kids with hemophilia who sometimes get multiple infusions in a day to combat a bleed. Or get stuck every day in hopes of beating back inhibitors so they can have a regular childhood. Inhibitor Family Camp is the Great Equalizer and we are eagerly looking forward to returning next year.

Despite the fact that it’s only a few short days, I leave feeling renewed and ready to tackle another year.

Inhibitor Family Camp at The Painted Turtle provided by CHES is the only “nearly guaranteed” camp we can be sure to attend in a year - health permitting.

Inhibitors, bleeds and complicated treatment protocols have made hemophilia camp through our local chapter something we can’t count on right now.

We do sign them up in hopes they can attend- but last year only one of the boys could go because the other had a bleed. I was in the ER with a disappointed child the day the chapter flew to camp.

Inhibitor Family Camp is the one event we look forward to each year where the kids are able to hang with kids like themselves. It helps them to hear that they are not the only kids with hemophilia who sometimes get multiple infusions in a day to combat a bleed. Or get stuck every day in hopes of beating back inhibitors so they can have a regular childhood. Inhibitor Family Camp is the Great Equalizer w and we are eagerly looking forward to returning next year.

Words are POWERFUL So How About Watching Your Language?

Published: LifeLines for Health, vol. 7 (Spring 2016)

by Dr. Gary McClain, PhD

Think back to the last time you had a really bad day. What was going on that day to make it so bad? And now, think about the words you might have used when you described it.

Did you really let loose with a big old rant on how bad things were? Maybe.

“I hate this.”
“This is the worst.” “It’s just awful.

Take a Step Back and Listen to Yourself

So, the first question to ask yourself: Was it really all that hateful, awful, the worst?

Now, think about how those words may have impacted the way you were feeling that day. Were you feeling optimistic that whatever it was you were dealing with, it wasn’t something you hadn’t been through before and would get through this time too? Or were you feeling like the world might just be crashing down around you, and that tomorrow might be even worse?

With words like “hate,” “worst,” and “awful,” chances are you weren’t feeling all that optimistic.

So here’s what I’m getting at:

There’s something kind of magical about words. The reason I say that words are magical is because the words we use have a very big impact on how we experience the world around us. For better, or for not so better.

I’m talking not only about the words you say to other people, but the words you say to yourself.

Think about the last time things didn’t go the way you wanted them to go. You know, one of those times that seem to come along all too often when you are living with a bleeding disorder.

And if you are a family member of someone living with a bleeding disorder, think about the words you might be using when your loved one hits a rough spot.

Think back to the words you used to describe what happened. On one hand, you might have talked in a way that implied that, while it was disappointing, it was at least something you could figure out a way to cope with, or even live with. Or you might have instead talked about it as if it was the worst thing that could possibly happen, soon to result in misery and despair.

Now, think about how the way you talked about the situation made you feel. Most likely, if you talked about it terms of possibilities, you felt disappointed/frustrated/annoyed, but not without options. But if you talked about it with words like “worst” and “awful,” you may have felt hopeless and defeated.

Take it a step further. The language you use when you talk about the challenges that come your way also affects the actions you take, or don’t take. If you tell yourself that a situation is the absolute worst thing imaginable, you are setting yourself up to view it as so insurmountable that you may as well not even try to expect anything better. And so you stay miserable and stuck.

Words are powerful!

The words we say to ourselves and the words we say to others. When you are first diagnosed with a chronic condition, and every experience is new, those words of desperation and defeat are more likely to be top of mind. But now it’s also the time to be aware of the words you are using, and try to use words that encourage you to stay optimistic. In other words, watch your language.

Here are some of my favorite words to watch out for:

The “hate” word. There’s not much to love or even like about the symptoms of a chronic condition or the medication regimen you may be learning to live with, along with the lifestyle changes. But do you hate it? Hate opens up the door to negativity, making everything a punishment when, if you look at it objectively, it doesn’t have to be. Look at it this way: How can you hate something that is helping to make you feel better?

“Living with” or “suffering from?”
This is a big one. If you’re living with a bleeding disorder, chances are you learned to face life on life’s terms, to do what you need to take the best possible care of yourself. Empowered. When you are suffering from your chronic condition, you place yourself in the role of victim, with things being done to you that you have no control over. You have a choice.

“Awful.” Using the word awful serves to put a situation in such a negative light that a set-back can feel like the world is crashing around you. That’s called “awful- izing.” Ask yourself: Is it really awful? Or is it just inconvenient? Or disappointing? Or frustrating? How you answer those questions will make a big difference in terms of the potential solutions you are able to identify.

“The worst.” This word goes hand-in- hand with “awful.” With the same impact on your outlook.

“Impossible” or “never.” Now, here’s a way to stress yourself out. Allow your mind to jump to the worst (there’s that word again) possible scenario and follow it down the rabbit hole. One of the best ways to conjure up this scenario is through the use of “impossible” or “never.” Because if a situation truly is impossible, if things will never get any better, why even try? Both of these words leave you backed into a corner with no way out. Again, as the victim. And you don’t have to be.

Talk Optimism, Stay Optimistic

Here’s how to keep your language more positive:

Choose to focus on what’s working. Not only on what’s not working. Remind yourself of what’s good in your life. Be grateful. Say it to yourself and say it out loud.

Remind yourself: I’ve been through this before. If you’re living with a bleeding disorder, or with someone who is, then this is probably not the first time you’ve felt this way. It might help to remember that you’re not in uncharted territory, and that you can get through it again.

Review your foundation. You’ve got a lot going for you. A health care team. Support. Knowledge. Coping skills. You’re resilient, right?

Get support. When you’re having a hard time, it’s all too easy to kind of shut down and get trapped in your own fears and frustrations. Reach out to someone who can listen without judgment and give you some fresh perspective.

Sure, living with a bleeding disorder brings surprises and responsibilities that you didn’t plan for. And yes, you’re not in control of everything that comes your way. But the words you use can create optimism or defeat – in your mind and in your actions. So, as your mom used to warn you: Watch your language!

Gary McClain, PhD, LMHC, is a therapist, patient advocate, and author, specializing in helping clients deal with the emotional impact of chronic and life-threatening illnesses, as well as their families and professional caregivers. He works with them to understand and cope with their emotions, to learn about their lifestyle and treatment options, to maintain compliance with medical regimens, to communicate effectively with the medical establishment, and to listen to their own inner voice as they make decisions about the future. His email is: gary@JustGotDiagnosed.com. He welcomes your questions and comments.