By: Barb Forss

Published: Lifelines for Health Summer 2020

You’ll probably never meet another Woman With a Bleeding Disorder (WWBD.) There just aren’t that many of you out there.” These were the words of the hematologist who diagnosed me in 1998 with severe, hereditary, FVIId. At age 47.

Fortunately for me, the words “no”, “never” and can’t” aren’t an integral part of my vocabulary. So, I was determined to find someone who bled like me, ANYONE, who could give me advice, support, friendship, and most of all, help me feel normal and not so alone.

Before computers, cellphones, and social media were around, resources and connection opportunities were limited. After attending a training session by NHF called “Woman to Woman”, I was propelled into the direction i needed to go. I needed to the comfort of being with other WWBDs and in 1998 LadyBugs was formed for all women with a bleeding disorder.

Slowly at first, then gaining momentum, LadyBugs gathered in cities in my state, mostly as social opportunities. Luncheons or teas, anyplace we could meet and tell our stories. Those stories were important, because they told us that not only were WWBDs not being properly diagnosed, but there was also a general lack of knowledge about treatment options.

One year, we actually had our very own special “Meet and Greet” session at NHF. How amazing to finally be able to give LadyBug Hugs to those I’d only written to or spoken with on the phone! We all felt like long-lost sisters thinking, finally...here’s somebody who “gets it and gets me”. Tears of joy were often mixed with tears of compassion upon hearing each other’s bleeding stories and corresponding treatment or, as was sadly more often the case, a lack thereof.

Flash forward almost 22 years, and with the amazing support of CHES, the LadyBugs Program, which started
as a grass-roots endeavor to just meet up with others like myself, is now the only program to hold a dedicated annual, national retreat for all WWBDs ages 16 and up. Women who have any bleeding disorder, including carrier mothers, sisters and daughters of men and boys, qualify to be a “LadyBug”.

LadyBugs encourages WWBDs to recognize and advocate for the care they need. Sometimes there are obstacles. That’s why our Retreats are literally loaded with experts from all types of beneficial disciplines. We have sessions with those who are experts at treating WWBDs... hematologists and OB-GYNs, nurses teaching us self- infusion, and yoga instructors showing us how to lower our shoulders from our ears and b-r-e-a-t-h-e. Mental health experts reminding us it’s ok to say “no” and not feel bad about it. We added an exciting one of a kind study component in 2019, and 2020 for women ages 18-50 with factor deficiencies to participate in the Assessment of Joint Arthropathy Using Ultrasound Technique in Women with Coagulation Disorders (WUP- Women w/ coag disorders Ultrasound Project) facilitated by Fernando Corrales-Medina, MD, and Kelli Fraga, DPT-PI/ Investigators and Joanna Davis, MD, Co-Investigator of the University of Miami.

WWBDs have glowing reports with statements like, “I learned more about my disorder here than ever before!”,“Thank you for empowering me to advocate for myself”, and “I like the intimacy
and just women involved. It provides a support system to expand our awareness and education to advocate for ourselves and families.” Probably the number one comment we hear at LadyBugs Retreats is, “This is life- changing for me. I can’t thank you enough.”

The LadyBugs Retreats are making a difference in the lives of hundreds of women living with SHEmophiliaTM, thanks to the generous support of CHES, nSpiration, and the companies who help fund their programs. If you’re interested in learning more about our Retreats, reach out at: https://nSpiration.foundation/ladybugs

We also have a closed group on FaceBook where we chat. And no worries, no one will ever try to sell you a product or service, and your name and stories are protected.

Now don’t forget to give out those LadyBugs Hugs!