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FARAFARA Cure FA

Johnna Wheeler

JohnnaName: Johnna Wheeler

Age: 30

Where do you call home? New Orleans

Education: I have my high school diploma, and I'm working towards going to college for Physics and Astronomy.

What is your relationship status? Do you have children? Single and happy! No kids, but I have 4 nephews that I love like my own!

How long have you known you are living with FA? I was diagnosed when I was 7. My teacher at the time noticed that I had balance issues, and suggested that my parents take me to see a neurologist.

Describe your transition from walking to walker/wheelchair: I put up a good fight, but at 17 I realized that I could accomplish way more in the wheelchair than I could struggling without it.

Johnna 3What do you like to do to stay active and what type of exercises work for you to stay strong? I do physical therapy and aquatic therapy every week, I also have a recumbent bike that I ride at home.

When FA gets you down, what do you think/do to feel better? Laughter! Anyone or anything that will get you laughing! And wine!

What is one way of living with FA has POSITIVELY affected your life? It has given me a lot of inner strength. On the outside, I might appear weak to most people, but inside I am a warrior!

What is the best advice YOU could give to a person who has been newly diagnosed with FA? It's ok to cry, I cry all the time. Things get unbearably hard and overwhelming sometimes. But when you're finished crying, you just have to shake it off, and rethink things. Don't stop trying. It will be harder and will take way more effort, you may do things differently than everyone else, but for the most part, you can accomplish it.

What is the first thing you want to do when a cure/treatment to FA is found? I would probably go swimming somewhere... swimming was my favorite thing to do when I was younger. And a big part of why I chose to do aquatic therapy.

"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? That I'm not going to let it hold me back, or stop me from accomplishing all that I set for myself.

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