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FARAFARA Cure FA

Nygel Lenz

NygelLenz1My name is Nygel Lenz, and I am 41. I live in Florida with my beautiful and amazing wife, our lovable pug, and our crazy fish. In short, I began having Friedreich’s Ataxia (FA) symptoms at 11; was certain that my balance was a problem at 15; and finally diagnosed at 19.

Growing up, I was a fairly typical, active boy. I played sports like football, soccer, basketball and baseball. I also loved my bike and skateboard, especially building crazy ramps and jumping them or doing tricks. Basically, I was outside doing some sort of activity whenever I had an opportunity.

My first FA symptom was scoliosis at age 11. I had spinal fusion to help straighten my back at age 15. As soon as I got up and started walking again, I realized that my balance was different. (In hindsight, there were other signs that I had ataxia, but it was obvious after that surgery.) Walking straight, having my feet always go where my brain directed them became an issue. It scared me!

I began seeing a neurologist after the surgery—at the beginning of my sophomore year in high school. I went all the way through high school undiagnosed. 

NygelLenz2I did well in high school and attended the University of Florida for my BA in criminology. I was finally diagnosed with FA at 19 in 1994, at the beginning of my sophomore year in college. (Before the genetic test was available, confirmed DNA-test in 2005. I mainly got the genetic test to be able to participate in clinical trials.) At the time, I was simply happy to have a name for my problem, a diagnosis. I did not really know what it meant. Honestly, I was in denial.

I had some wonderful friends in college that did not treat me any differently. That FA-diagnosis semester was my worst semester, but I kept going. I had down days then, and I still do. Most days are good and/or good can be found. Friends are important to help. Friends in the FA community are vital.

I went on and earned two master degrees and currently teach online as a criminal justice adjunct professor at American Public University.

There are certainly many wonderful things in life. Meeting and marrying my wife tops my list. We love to travel, watch movies, go out to eat and explore, go to concerts, parks, and spend time with family and friends. We recently moved into a house that we bought. Remodeling is occurring but mostly still as a dream. :) We love it! My wife loves gardening, and we are enjoying our little nature zone with the small, active lake on the side of our house.

Some days are tough. This reminds me of a Buddhist quote: “Fall down seven times. Get up eight.” FA impacts us; it knocks us down—figuratively and literally. How we respond is up to us. We must be resilient. We must keep getting up! If you need help getting up, there is no shame in asking. We need each other. We all have various talents and skills. Use them for your health, happiness and to help cure FA.

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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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