Comprehensive Health Education | Rare Bleeding Disorders

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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.