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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

Comment(1)

  1. Reply
    Kathleen says

    The story of this youg woman is amazing and one that I want everyone to know about.
    She has so much to teach people and offer. She is the strongest person I know, I am
    her mother.

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