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FARAFARA Cure FA

Lake Denk

Hey everyone, my name is Lake. I am 32 years old. I live in Kansas City, Missouri. I’ve been in the Midwest most of my life. I was diagnosed with Friedreich's Ataxia 11 years ago. It all started when I was in college and I wanted to ride my bike on some of the dirt trails. It’s hard to describe the feeling to others without FA (but you know what I’m talking about) of knowing in your mind how to do something, but your body is saying no. Shortly after that I went to a neurologist who ran a gamut of tests; MRI, CAT scan, blood work, EMG (my personal favorite) and a spinal tap.Lake

Nothing. Nada. As far as he could tell by the results I was healthy, but from what he was seeing and hearing from me, he wanted a second opinion. He sent me to another neurologist, from one look at how I walked and what I described, he had me do a new DNA test that had just came out. I was tested for Charcot-Marie-Tooth disease (CMT) and Friedreich’s Ataxia (FA). The result came back that I unfortunately had FA. My first question was “How do I get rid of it?” The answer from the neurologist, currently there is no treatment or cure, was clearly something I didn’t understand.

Let's just say it wasn't good for the liver being a 22 year old college student that was told she had a life-shortening neuromuscular disorder. I took the news hard, the more I read about the details of FA, the more I wanted to just give up. For many years, I just went through life, day after day (kind of boring). But with the help of my friends and family, I started to see the beauty in everything, I started to care.

 

Ever since I was diagnosed I have been fighting tooth and nail to maintain normalcy. “The cool kids don’t use crutches, the cool kids don’t use a walker”…well let me tell you it is not cool to fall in public or potentially hurt yourself.

If anyone tells you it’s easy, it’s not. But nothing that truly matters is. I can say that I overcame a bleak diagnosis. I could be on my couch feeling sorry for myself for what was handed to me (which is totally understandable), but what a waste. Instead, I travel, spend time with my wonderful friends, spoil my daughters, Ella (my Boston terrier) and Basil (my Mane Coon) and share my life with my biggest fan, Tiffany.

Life could be worse, I could have regrets.

Lake


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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