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FARAFARA Cure FA

Bridget Downing

BridgetDowning1Name: Bridget downing

Age: 29

Where do you call home? Charleston, South Carolina

Education (degree(s)): I have a bachelor's degree in elementary education from Elon University and a master's degree in science and math for teachers from the College of Charleston.

What is your relationship status? Who do you live with? I am single and live alone.

What's a typical day for you? I teach kindergarten, so my alarm goes off at 4:45 and is very busy as you can imagine! The school day ends at 2:25, but I always have work to do after school. I try to leave at a reasonable time most days (between 4 an 5) so I can go to physical therapy, work out on my own, or go to happy hour. 

How long have you known you are living with FA? I started with symptoms when I was about 8, but it took a few years to diagnose as I have a rare point mutation. My type of FA is very a different from the standard kind as it only affects my walking. There were a few years of tests and doctor appointments where other diseases were ruled out.

Are there any others with FA in your family? No

BridgetDowning2Describe an adaptation and/or transition you have had to take due to living with FA. I refused to use a mobility device through high school and was very dependent on some wonderful friends. When I started college, my parents knew I needed something and by some miracle this was the year the Segway was invented. It was hard to accept I couldn't walk on my own anymore, but the Segway also gave me a wonderful sense of freedom I hadn't had since I was young.

What do you like to do to stay active and what type of exercises work for you to stay strong? I recently started hand cycling. I only use it recreationally and don't think I will be doing any races anytime soon, but it's nice to have an exercise option that I can do outside. I also go to physical therapy and do weights and the treadmill on my own.

Do you have any hobbies or special interests? I really like baking and crafting, which both go hand in hand with teaching kindergarten.

When FA gets you down, what do you think/do to feel better? I enjoy handcycling or exercising in some way. It makes me feel like I am doing something to help myself and that I am in control of my body.

What is one way living with FA has POSITIVELY affected your life? I have met some truly amazing people. Everyone involved with FARA are very selfless people who have dedicated a lot of their lives to a common goal. Everyone who I have met that is affected with FA seems to have a positive attitude and perseverance that makes them wonderful to be around.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? I would say to get involved and meet people in the FA community. Know that you are not alone in this. I would also suggest finding a form of exercise that you enjoy and will do regularly.

What is the first thing you want to do when a cure/treatment to FA is found? Buy high heels!

"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 live my life very independently of my disability. There are some people who see it regularly and others who choose to look past it like me. It may sound odd because I very clearly am unable to walk, but FA really doesn't affect me on a daily basis because I don't let it.

PaigeMyersmtcsignaturePaigeMeyers


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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