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FARAFARA Cure FA

Hannah Barnhill

Meet HannahName: Hannah Barnhill

Age: 19

Where do you call home? Eastern North Carolina

Education: I am currently studying Sociology at East Carolina University (GO PIRATES!) and am on track to declare my major officially in the spring. I want to work with kids who also have muscle diseases to motivate and encourage them that this is not where it ends!

How long have you been living (or known you are living) with Friedreich's Ataxia? When I was growing up, I was always very clumsy. Doctors insisted that it was because I grew so fast that I hadn’t “grown into my legs”. However, when I was 17 and 5’9, I had still not “grown into my legs,” so my doctor recommended that I be seen by a neurologist for further testing. After several MRI’s and genetic testing, I was officially diagnosed with Friedreich’s Ataxia.

What do you like to do to stay active and what type of exercises do you do to stay strong? As far as staying active and exercising, I still do everything I did before I was diagnosed such as playing tennis, working out, or working out on leg machines such as the leg press. Although I might not be able to do exercises as strenuous as I once could, I make it part of my daily routine to stay strong. As a result, my neurologist told me in June (2014) that I was actually stronger than I was the last time he saw me in June of 2013. If that’s not motivating I don’t know what is!

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? Although being diagnosed with FA is not what anyone wants, I think it truly changed my life for the better. Not only have I become much stronger mentally, I have also been told by several people that I inspire them because of the way I am handling my situation. These same people have served as an inspiration to me due to the challenges I have watched them face. Knowing that telling my story to others has encouraged them makes me realize that maybe this diagnosis wasn’t to hurt me; it was to make others around me stronger. At the end of the day, making other people happy is so much more rewarding and it also makes me feel good. What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Don’t Google anything about FA! Yes, it is a life-threatening disease but it also affects everyone differently. This diagnosis is going to change your life but you’re in control if it changes it for the good or the bad. So make this diagnosis turn out to be something positive in your life and use it to inspire others. Sometimes it might be hard, but just remember God gives his toughest battles to his strongest soldiers. You’re here for a reason, so never give up.

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? The first thing I want to do when there is a cure for FA is get out and buy every pair of stilettos, wedges, or any types of heels that I’ve never been able to wear and rock them!

"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? This statement is something I have to remind myself of sometimes. Even though times get stressful, this disease doesn’t define me. I might have to physically work a little harder than other students, but I can and I will do it! I live my life as a college student, not as a college student with a disability.


We are stronger together! Find a new "Meet the Community" interview every Monday. Stephanie

 


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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