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FARAFARA Cure FA

Allison Dana

Allison DanaName: Allison Dana

Age: 35

Where do you call home? Burlington, Vermont

Relationship status? Do you have children? Married for four years with three year old identical twin girls.

Occupation/Employment: Stay-at-home Mom.

Education: Bachelor of Science in Nuclear Medicine Technology.

How long have you been living (or known you are living) with Friedreich's Ataxia? I was 19 and a junior in college when I was diagnosed although looking back, I was showing symptoms about 16. Before I had the genetic test, I was taking Anatomy. The last section of the class was CNS (central nervous system). When I read the description of ataxia, I knew that's what I had. I didn't know what kind but found out it was FA a few months later when I got the results of the genetic test.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? We think my great-great aunt on my mom's side had FA. She died around 1940 so obviously never had a genetic test but my grandfather remembers her walking like she was drunk and using a wheelchair.

Describe your transition from walking to walker/wheelchair. I was in my late 20s when I began using a cane and then a walker a year or so later. I was at one of the first symposiums at CHOP soon after that and saw Jade Perry walking with the support of her Great Dane service dog. We talked extensively and when I got home, I started the process to get my own Great Dane service dog (www.servicedogproject.org). Spot came home with me a few months later. Her main job was to support me when I walked and she definitely kept me walking for years longer than I would have with a walker. As my disease progressed, I walked less and less and used my wheelchair more and more. But that was no problem for Spot because she pulled me in my chair. We'd fly down the halls at my old work! Towards the end of my pregnancy, I started using my chair full-time. Spot died in July, but I'll be forever in debt to her. My husband and I are training a goldendoodle puppy to be my next service dog. Her role, when fully-trained, will be that of a traditional service dog.

What do you like to do to stay active and what type of exercises do you do to stay strong? I have a stationary bike that I ride usually 4 times a week. I also stretch and do some arm and core-stregthening exercises.

Do you use any tech aides? if so, what works or hasn't worked for you? I recently got adaptive driving equipment. I now feel much safer and more comfortable when driving.

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? I'm definitely more of a fighter than I probably would have been and I advocate for myself when it comes to my health. I've always been fiercely independent and hated asking for help. I still don't like asking for help, but I've learned how to now and the necessity of it sometimes. Most importantly, without FA, I wouldn't be part of an amazing community that has banded together to not only live life to the fullest but beat this disease.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Find a FA expert/researcher that you really like and gives you easy access to him/her for questions in between appointments. This person also needs to be willing to correspond with your other providers if needed. I travel 8 hours to see Dr. Lynch once a year, but the time involved is very much worth it.

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? Pick up my kids from a standing position.

"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? It comes down to living my life the same with or without FA. I wanted to get married and have kids from a young age. My physical abilities are quite a bit different than I visualized but I still completed what I wanted to do.

 


 

 

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

 

 
 

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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