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FARAFARA Cure FA

Elizabeth Bowen

ElizabethBowen1Name: Elizabeth Bowen

Age: 34

Where do you call home? Hilton Head Island, South Carolina, born and raised.

Education: I have attended some college. I used to think it was very important to obtain a degree. But now I feel like as long as I can continue to learn new things, I’m good. I very much hope to write a book sometime in the future.

Who do you live with? I am divorced and have two children. I live with my parents and two out of three of my younger brothers. I am currently in a deeply committed relationship with my cat.

What's a typical day for you? I don’t exactly have typical days. Sometimes I have appointments, head to the gym, maybe I’m doing volunteer work, or maybe I’m spending time with my mom, painting and watching TV.

How long have you known you are living with FA? When I was 12 years old, I went to get a physical from the doctor in order to play basketball for my school and he diagnosed me with scoliosis. I began seeing an orthopedist to treat my curved spine and he believed that I might be suffering from another condition, ordering a DNA test. When I was 14 years old, I was diagnosed with FA. 

ElizabethBowen2Describe your transition from walking to walker/wheelchair. I had my first child, my son, when I was 21. I used a walker on occasion for about three years prior to that. When he was about five months old, he began to get too big for me to balance while carrying him and trying to get other things done around the house, so I got my first wheelchair. Over time, of course, I became more dependent on it, completely relying on my wheelchair now.

What do you like to do to stay active and what types of exercises work for you to stay strong? I like to go to the gym and work with a trainer. I also like to work with a physical therapist. Even when I am relaxing at home, I always try to keep moving. Whether it’s leg exercises or stretching or even just muscle contractions, I never stop. I think it’s good to move anyway you can, whenever you can.

Do you have any hobbies or special interests? I like to paint and I’d like to volunteer more.

When FA gets you down, what do you think/do to feel better? I think about the things that I have been blessed with. I remind myself that every person is going through something, continuous or temporary.

What is one way living with FA has POSITIVELY affected your life? It has helped me in at least a couple of ways. I see things from a unique perspective because of FA. And my children have become incredible people, independent and compassionate.

What is a favorite motivational quote of yours? ”Infuse your life with action. Don't wait for it to happen. Make it happen. Make your own future. Make your own hope. Make your own love. And whatever your beliefs, honor your creator, not by passively waiting for grace to come down from upon high, but by doing what you can to make grace happen... yourself, right now, right down here on Earth.” --Bradley Whitford

What is the best advice YOU could give to a person who has been newly diagnosed with FA? It will be ok. Be strong. Remember that no matter how lonely you feel, you’re not alone.

What is the first thing you want to do when a cure/treatment to FA is found? The first thing I want to do is dance with my children.

LealanSims sig 16 mtc


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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