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FARAFARA Cure FA

Allie Kittel

AllieKittel1Name: Allie Kittel

Age: 25

Where do you call home? Northern New Mexico

Education: I am currently in college studying drawing and painting.

Where do you live? I live alone in an apartment.

How long have you known you are living with FA? I was diagnosed when I was 5, but my parents told me I had FA when I was 8.

Are there any others with FA in your family? My older brother, Aaron, also had FA. He passed away in 2010.

Describe your transition from walking to walker/wheelchair. I had been walking without mobility aides until I was in high school. I started using a walker to help with balance and using a scooter to get in between classes faster with less fatigue. I used a wheelchair for shopping and longer activities outside of home. I got my first power wheelchair at 18. I started by using it most of the time outside my home, still walking some with my walker. I believe my transition to power wheelchair has kept me independent for a long time, by conserving my energy and allowing me to ride around for long distances independently.

What do you like to do to stay active and what type of exercises work for you to stay strong? I go to physical therapy 1-2x/week. There, I stand in the parallel bars, ride a stationary recumbent bike, and do other strengthening exercises. Physical therapy has been the best thing I do for my physical well-being, as well as my mental health. At home, I stand for longer periods in my standing frame and I have some exercises I can do from my wheelchair. 

AlliKittel2Do you have any hobbies or special interests? I love drawing. It has been the biggest gift to rediscover this passion I had had as a child. In recent years, I could not think of anything I wanted to do with my life, I wasn’t sure what even made me happy. It was the loneliest feeling. And then, I remembered art. So, I took one drawing class at a local community college, out of curiosity. I feel in love with creating again, and now I’m pursuing my growth as an artist. Creating art is the most important thing in my life right now!

What is a good trick to make daily life easier? I have a caregiver that comes over often to help around my home. I’ve found that even if there’s something I can do on my own, like cooking, it’s ok and sometimes necessary to ask for help. I like cooking but I get help with it sometimes, either for safety or to conserve time and energy.

When FA gets you down, what do you think/do to feel better? What usually gets me down is thinking I know what my future looks like with FA, and projecting the worst outcome. I remind myself that I don’t know the future AND I’m currently living in the present. I acknowledge my current abilities, and practice gratitude for what I have in my life and what I can do. Then I do something, and get out of my head.

What is one way living with FA has POSITIVELY affected your life? Because of living with FA, I have learned to take advantage of my current abilities and do what I want, now. There’s no reason to put off what I really want to do, because next year, it may be harder than doing it now. My abilities right now are probably as good as they will be. I’ve taken advantage of more opportunities in my life because I have FA. I have studied in Germany, traveled/lived out of my van, been to Burning Man, moved to CA and OR and NM, gone to school for acting, left school for acting, immersed myself in drawing… I’ve taken many risks that I’m proud of.

What is a favorite motivational quote of yours? “Don’t wait for inspiration, it comes while working.” –Matisse

What is the best advice YOU could give to a person who has been newly diagnosed with FA? I would say, don’t try to predict your future so you can feel sorry about it. I’ve wasted so much time feeling upset over a story I told myself about my future. No one really knows what the future holds. Do not limit your dreams. If you have a passion, there are always ways to live it. Remember what you can do instead of focusing on what you can’t do. I know it’s hard sometimes, but gratitude is a very powerful tool. Do what brings you joy.

What is the first thing you want to do when a cure/treatment to FA is found? I want to go for a hike.

"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? To me, this means I may have this disease but it doesn’t define me. Who I am is not limited by not being able to walk. I do not live consumed by thoughts of being disabled. Sometimes it gets me down, but we all have disabilities. I do my best to adapt, accept and then experience what else life has to offer.

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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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