I’ll admit, I was a bit nervous starting my first clinical trial. A 5 hour drive and overnight stay gave a clear distinction that I wasn’t in my comfort zone. How difficult would the testing be? How stressful would the next few months be during the trial? When would I be able to leave and get lunch (I was very hungry!)? I settled my nerves (FA medical pun intended) and reminded myself why I was doing this…
I won’t claim to be selfless and heroic, saying I was doing this for the FA community. To be honest, I was hoping to personally benefit from the treatment. I had done extensive research on my own, consulted with my physician, and decided the mechanism of this drug was most promising at my stage of progression. Of course, I want the drug to be successful and move forward to a treatment for everyone. But my main motivation to get involved now was to see if my health might improve (trial is still underway… can’t share any details of how I’m feeling…).