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FARAFARA Cure FA

Dave Arnold

“You cannot change the cards you are dealt, just how you play the hand” - Randy Pausch
 
My name is Dave and I live in Grand Rapids, MI. I am 30 and I was diagnosed with FA when I was 26. I was married in August 2014 and we are expecting our first child in September 2015. I am very fortunate to still be able to do most things independently. I am also very fortunate to have a wonderful wife and very supportive family & friends to help with some of the things I cannot do independently. 
 
Growing up I was very athletic and played many different sports. It was not until after high school around age 19 that I was starting to become very clumsy and my body was not able to perform like it had previously. It progressed steadily over the next few years. My issues became a noticeable problem at the age of 23 when I began attending college. People were always asking me “if I was drunk or something”. I was sent to a neurologist at the University of Michigan where he said right away that he suspected FA but we would have to do a genetic test to be sure. I had never heard of FA so I went home to research it. I was shocked at what I found out and couldn’t accept the fact that it could happen to me. So I did not get the genetic test, and tried to hide it for the next three years. I thought if I ignored it, it would go away. By doing this I caused myself a lot of anxiety and depression.
 
By senior year I had a kyphosis in my cervical spine that required surgery. At that point I had to finally face this head on. I was tired of feeling ashamed and not doing things because I was so worried about what people would think of me. I went back to my neurologist and had the test. Of course it was positive and even though I knew it was coming, the phone call confirming FA still hurt. After having the correct diagnosis, and taking the time to accept it, I decided that my life would not stop that day. I will keep moving forward and continue accomplishing my goals. Focusing on the many things I can do, not the few things I cannot. 
 
In 2012 I graduated from Central Michigan University with a Bachelor’s degree in Clinical Exercise Science, and I am currently working on a Master in Pharmacology and Toxicology from Michigan State University. I am always trying to stay physically active however I can. I love to exercise, and to find new ways to push my body. Sometimes I fall, but I get back up. During my neurologist annual check-up over the last two consecutive years my FARS test scores (the test many neurologists use to keep track of a FA’ers rate of progression) have improved by a few points each visit. I have high hopes for the future and I’m devoted to not letting FA define who I am.  
 
I look forward to what FARA and all the FA research will bring us this year!!! I am honored to be part of the FARA Ambassador Program, and have the opportunity to work with such amazing people.
 
 

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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