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FARAFARA Cure FA

Paige Myers

Name: Paige Myers

Age: 20

Where do you call home? Northeast Ohio

Education: I am a sophomore at Case Western Reserve University, majoring in Systems Biology.

How long have you been living (or known you are living) with Friedreich's Ataxia? When I was eight, we moved, and one of my teachers noticed my walking was slightly off. She suggested to my parents that I get checked out, and my doctor did a couple of tests, saw that it was neurological, and referred me to a neurologist and a cardiologist. The whole process was extremely fast. I was diagnosed within months of showing subtle symptoms. I had recently turned nine.

Describe your transition from walking to walker/wheelchair. When I was 12, I got really sick and was off my feet for almost two weeks. After that, I couldn’t walk unassisted anymore. I started using a walker, because I could still walk easily when I was holding something. I was really stubborn to stay walking as long as I could, even once it got so bad I had to have people hold on to me for even more balance. The summer before my senior year of high school, I told myself I was almost 18 and I needed to be more independent. I started using a wheelchair then, and it made me more independent and confident at school. What do you like to do to stay active and what type of exercises do you do to stay strong? I did physical therapy for a long time, though I’m not doing that right now. We’re required to take two semesters of gym, so I did that last semester, and I did a lot of core and arm exercises. I actually spent one day a week just going around the track as many times as I could. I also try to go around campus on my own whenever the weather’s decent, because I wanted to use a manual chair, and I think pushing myself around is a great way to exercise.

What's your most comfortable pair of shoes to wear? I love my converse and have many pairs in various colors!

Is there a diet plan you like to follow? I’m a vegetarian, which has nothing to do with FA, I just wanted to do it. One thing that I find to be really important is to drink plenty of water. What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? FA has made me a more tolerant person. Before I showed any symptoms, I was mean to anyone who was different in any way, which in retrospect is hypocritical. I was pretty young, and I probably would have grown up without FA forcing me to, but as I never got that chance, my 6-year-old self really stands out to me. I have realized that we all have problems, though we don’t know when they’ll appear or what form they’ll be in. I can’t say having FA is a great thing, but it has taught me really important things about life.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Having a positive outlook is critical. Don’t focus on what might happen and instead try to live in the moment. I was young when I was diagnosed so I didn’t completely grasp what was going on. However, my parents tried to get me involved as soon as possible, and that was great. I participated in a clinical trial months after I was diagnosed. It’s good to know what’s out there and also to know you’re helping out. You can also meet great people by getting involved, and there’s strength in numbers!

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? My brother runs, and I’ve always wanted to do that. I could never run very well! "I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I try not to dwell on my diagnosis that much. Being a biology person, when I think about it, I do so from a scientific perspective. Looking at it this way puts a reason behind it, and also helps to see that a lot of what we experience is conscious, not objectively scientific. I try to see that FA is restricted in what it can do but I’m not.


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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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