Published: Lifelines for Health Fall 2019
by Kenneth Martin
Many, and I do mean many, years ago I would go to the original Camp Bold Eagle and events through the local chapter, and my brother and I would be the lone people with an Inhibitor. There was talk about new treatments and I would ask, “Does it work for inhibitors?”, and the answer was always the same - “No.” Not until the early 90’s was there specific treatment for inhibitor patients. Even then the effectiveness of those treatments for me were barely measurable. I participated in trials and studies and again, the results did not include an opportunity to change things for myself.
I was formally diagnosed with an inhibitor at age 5, but it was Dr. Jean Lusher’s opinion that I had always had an inhibitor to Factor VIII. I had been dealing with, living with, succeeding with (to an extent), my inhibitor for years. I was married with two boys, working full time and had a life outside of hemophilia; even with having over 40 bleeds a year.
Due to the dark ages in hemophilia in the late 1980s and 1990s, I retreated from the community to concentrate on my family which was fine by me because there wasn’t anything available for me or my specific condition for nearly twenty years. Then new products, new treatment regimens for people without inhibitors became the norm in the community. Mysteriously, the number of inhibitor patients increased. So much so that in 2005, there was an actual program created JUST FOR INHIBITOR PATIENTS! My wife and I attended in 2006 and met a lot of other patients who were dealing with being newly diagnosed with an inhibitor and how it was changing their life. I told them that I had never remembered not having an inhibitor.
From that early program, other resources have evolved. CHES is one of them. It allows for adults to interact and relate their experiences, troubles, triumphs to each other and most importantly... just listen. I actually cherish these new opportunities to meet and become friends with others who are going through the same things that I am going through. Unfortunately, there aren’t many that have been there before me to rely on anymore, but there are a few who are in similar situations in their life like myself. Programs like Momentum help me, help others and provide an opportunity for me to receive what I might need at a given time. Whether it be new ways of doing things, new ways of keeping myself healthy, both physically and mentally, this program teaches, helps, and nurtures my well-being to keep me moving forward in my life.