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FARAFARA Cure FA

Paige Myers

My name is Paige Myers. I live in Akron, Ohio with my parents, my younger brother Jared, and our sheltie Zoe. We also have a blue parakeet named Buddy. I read a lot growing up. I’m of the age that I grew up alongside Harry Potter, so naturally I think that is the best thing ever. 
 
I was diagnosed with FA when I was 9. We had just moved to a new school district, and my teacher noticed a subtle abnormality with my walking and suggested I be checked for scoliosis (ironically, to this day I’ve never had scoliosis). My family doctor saw the telltale neurological signs, and a cardiology and neurology appointment quickly confirmed FA. The entire diagnosis process took only a matter of months.
 
Fast-forward a few years to when I was 12. I got very sick—completely unrelated to FA, probably an aggressive flu or something—but it knocked me off my feet for two weeks. That was long enough that I could no longer walk unassisted after that. I started using a walker. For a while the walker provided adequate support, and I could even go short distances without it. I would normally leave it by the door of the classroom and walk around inside by myself.
 
I “walked” until the end of my junior year. I put that in quotation marks because I had truly lost the ability to walk long before that. By my junior year, I was putting the majority of my weight through my arms, and I had to have an aide next to me at all times to grab me when I lost my balance, which was a lot. I definitely should not have been walking. But I’m very stubborn, and the administration didn’t help when they tried to convince me to use a wheelchair because that only made me more determined not to.
 
I’ve come to realize that a large part of why the transition to a wheelchair was so difficult for me is the finality of thing. I understand very well the nature of a progressive disease, and especially now that I haven’t walked for several years I know I might not walk again. That’s not what bothers me exactly, though. I was never an athletic person, and I’m still not. I have no desire to be. It’s not who I am. While of course that doesn’t make the wheelchair ideal, it’s not horrible either. My problem with making the transition was more that I felt like I would be letting the progression win.
 
But I don’t feel that way any more. When I was starting my senior year in high school, I decided I was almost 18 and did not want to be so reliant on aides anymore, so I started using a wheelchair. I gained back a lot of independence and confidence. I don’t at all regret my determination to walk as long as possible, but I was more than ready to make the transition, and I’m very happy I did!
 
I was really scared to talk about FA for a long time. In fact, even most of my current friends don’t know more than the basics. I used to avoid FA totally; I went so far as to even deny it when directly asked about it (I now find that quite ridiculous). I’m not scared of it anymore, more like I just don’t know how to talk about it. FARA Ambassadors is my first effort to get myself more involved in the FA community, and I’m very excited about this next step.
 
I’ve talked a lot about FA stuff here, but I really don’t let it define my life. Like I said, I never talked to most of my friends about this. Mostly it just never came up. I’m definitely going to try to change that, but when I’m with people I don’t think about it much. FA is part of my life, but not all of it! In my freshmen year of high school, I took my first biology class, and I’ve loved biology ever since! I’m currently working on my undergrad in systems biology with a concentration in cellular and molecular biology at Case Western Reserve University, in Cleveland, Ohio. After graduation, I plan on continuing into a graduate program in either genetic counseling or genetics (with which I would run clinical trials).
 
I also love history. I took U.S. history in my freshman year of high school also, and toward the end of the year we did a project where we interviewed someone who was alive during WWII. Though this was U.S. history and an ethnic German who lived in Yugoslavia at the beginning of the war is obviously not American, I got permission to interview my grandpa anyway. I found it really interesting, so European history is my second major interest.
 
In my free time, I explore attractions and neighborhoods in Cleveland with my friends. Many of these areas are older and largely inaccessible, but people are always willing to help and we make it work! I’m also starting up a club at my school for disability advocacy, which was inspired by a panel I participated in the spring of my freshman year about living with a disability and its implications for school. I’m the president of that group, and I’ve spent a considerable amount of time trying to get us off the ground.
 

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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