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Story of an ataxia guinea pig!

Where to begin, where to begin…

My name is Gabrielle  and  I was diagnosed with Friedreich’s ataxia at 13 and I am now 24.

I have participated in quite a few clinical trials since my diagnosis, of freewill, because I want to help research in any way I can.  I have done some in Canada and in the US. The last one I did was  two years ago in Philadelphia.

It was during the fall and winter semester of university which made things quite… interesting.

I had to study for midterms and finals in the car and plane!

Plus, I live in Montreal, so, I got a couple canceled flights and had to wait so long in airports (Philly and Toronto) to get back home.

I started in November 2016 and ended in April 2017. To start, I had to pass a phone interview just to make sure I was a potential candidate, so check for risk of pregnancy, other medication and such.

Two weeks after that I flew to Philadelphia for the screening visit, so they checked if I qualified for the study. They did a timed 25m walk, an exercise test, I had to complete 12 minutes on the bike at a minimum pace of 60rpms (rounds per minute), blood work, the wonderful peg-test (Which is not actually that bad, but everyone including some doctors dislike it. Maybe it’s because someone is always running around for the pegs… oops!) and a few others. Basically, I was at the hospital for about six hours.

I was approved shortly after, so I had to go to Philly every other week for about two months. Every time I went, I had at least blood work to do. Exercise tests and EKGs were on and off.

After two months, I went after three weeks and six weeks just for blood work. When I stopped the treatment, they had me redo all the screening visit tests to do a full circle of everything and they could compare that with their baseline. I went back two weeks after stopping for safety purposes (safety visit), so I just did blood work and talked about how I’d been or if I was noticing anything good or bad.

I find it very important to participate in trials or studies if I can, because it helps research progress. Clinical trials allow to test out what has been researched or discovered. And that’s real important, because as much as a treatment might seem to work on paper or in a petri dish, you never know what the results will be in a person.

I’ve also been part of an observational study since my diagnosis. Observational studies just follow people affected by a certain disease or other. They allow a better understanding of how a disease can affect people and how a disease progresses through time in a person. Understanding the progression of a disease and its effects can best help improve drug research, because it explains how a disease works and what needs to be changed to “slow, stop, reverse” the progression.

Gabrielle

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