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The Patient Perspective
(A note from one of our subjects)
To me, it's about trying to do something meaningful. I was fortunate enough to be raised on a dairy farm. From that, my brother and I expanded the farm operation, and continued the dairy, after high school for several years. I really felt was doing something rewarding and useful. With the progression of FSHD, I had to give that lifestyle up in the mid 1990's at about age 30.
Getting involved in the Resolve Study, as well as several other Clinical Trials, has helped fill that void of trying to do something useful. I used to think that Clinical Trials were just about testing new treatments, but that is not the case. They need data,data,data…. Any successful research has to have the data to back it up. That's where studies like the Resolve Study come in. I live about 120 miles from KUMC, so it wasn't always easy to make the trip, but I also feel fortunate to be close enough that I could drive.
The staff at KUMC has been great to work with. From the scheduling of the visits, to the days spent performing the different tests, it's been a very positive and rewarding experience. I've been able to meet and work with some great people over the years just by being involved. It would be great if my progression of FSHD could be stopped, but to me it would be very meaningful to keep someone much younger to not have to experience the same loss of muscle. While I've been lucky to land in a rewarding job (911 Dispatcher) after leaving the farm, participating in Clinical Trials is another way to do something rewarding, and a small way to leave the world a better place.
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