On January 19, 2016, I was diagnosed with FA. My family and I decided to take an educated approach, and we did just that. Within a few weeks, we had read countless websites about the symptoms and what we could expect with my new diagnosis. Soon, we began learning about the science behind FA, and we eventually found ourselves reading about clinical trials. By April, I was signed up for one; my first visit was to be on the 15th.
Even though it had been less than 3 months since my diagnosis, I knew that a clinical trial was something I wanted to involve myself in. It was something that just made sense for me. Added bonus: The drug company, Reata, was able to pay for plane tickets, meals, etc.! I knew that as well as being helpful for the community and everyone looking for a cure for FA, I may be able to benefit also. For example, one of the tests I did was a stress test, where progression is measured by viewing one’s exercise capacity via a recumbent bicycle. Largely because of this test, my family purchased an exercise bike which I use daily. As another example, since I am in highschool, I knew that this trip would be a learning experience for me. I was able to learn a lot about restrictions and necessary testing for a clinical trial. Every doctor was able to teach me about their specific test, and the lead doctor, Dr. Hoyle, taught me about basic neurologic tests, and even some about myself.Add a comment