Profile: FA Helped Him Learn What's Important in Life

Nygel Lenz and his fiancee, Carolyn Hunter, at the 2010 MDA Telethon local broadcast in St. Petersburg, Fla.
Article Highlights:
  • Part of the 2011 In Focus report on Friedreich's ataxia, this article tells the story of Nygel Lenz, a 36-year-old man who has been affected by FA for more than half his life.
  • The article discusses Lenz's inability to accept his diagnosis early on, and how he eventually decided to learn everything he could about FA, which helped him become confident and empowered.
by Miriam Davidson on January 1, 2011 - 3:58pm

QUEST Vol. 18, No. 1

Growing up, Nygel Lenz was a typical active boy. He played football, soccer, basketball and baseball, and loved doing tricks like jumping ramps with his bike and skateboard. He learned he had scoliosis at age 11, but his life didn’t really change — until he had surgery for the condition at age 15. His balance worsened immediately, and he began seeing a neurologist, but it took almost four years to confirm that he had Friedreich’s ataxia (FA).

“I experienced most of high school wondering what was wrong with my body,” says Lenz, 36, of Clearwater, Fla. “My balance kept worsening. I stopped playing sports and became increasing self-conscious, concerned that others would see me walk awkwardly, and that girls would not be interested in me. I was scared, but I tried to maintain normalcy and only told my closest friends.”

A good student, after high school Lenz was able to complete both college and graduate school. “I was not going to allow FA to defeat me,” he reports. “However, I must admit that I did not completely accept FA or confront what the diagnosis meant. It is daunting. I used a cane for a couple of years, a walker for a couple of years, and I finally began relying upon a wheelchair after graduate school [in 2001].

“I experienced stares and questions. I still do. I experienced rejection from girls. I avoided going to events that I wanted to attend, like Gator football games when I was a student there. I had to stop driving. I could not find a job.”

Lenz finally decided to learn all he could about his disease, in order to empower himself and others. He joined a support group, then began leading it in 2002 and hosted a national meeting in 2005.

“I had a lot of responsibilities in terms of leading fundraisers, seeking guest speakers, finding hotels and speaking,” he says. “This is only one example of something I never would have done if I did not have FA.”

His confidence boosted, Lenz was able to find a job. Since 2004, he has worked at the Pinellas County Juvenile Assessment Center, counseling troubled teenagers. Even though many of the kids he counsels are criminals and gang members, they have never given him any trouble — perhaps because they realize that Lenz knows something about struggle and hardship himself.

Like many with FA, Lenz has hypertrophic cardiomyopathy. Beginning in 1999, his heart would occasionally go out of rhythm or into atrial fibrillation, making him extremely short of breath, sweaty and exhausted. The symptoms have gotten much better since Lenz underwent two radio-frequency ablations (a procedure that uses high-frequency radio waves to treat the heart’s electrical conduction system) in 2004 and 2006. He currently gets echocardiograms about once a year, and monthly EKGs and monitoring of the heart medications he takes.

Lenz participated in a study of the drug buspirone as a potential FA treatment, but it worsened his symptoms. He also tried coenzyme Q10, without benefit. He enjoys physical therapy, but his insurance does not pay for enough sessions per year to really make a difference. “I need a PT to push me and help me exercise,” he says.

Lenz recently went back to school to get a second master’s degree in criminology and criminal justice, so he can get the accreditation he needs to teach college. He enjoys spending time with his friends and fiancee, joking, playing games, writing and traveling.

Active in fundraising and other activities for MDA, Lenz received the MDA Robert Ross Personal Achievement Award for the state of Florida in 2009. At 36, he has lived more than half his life with Friedreich’s ataxia.

“Of course I would prefer to not have had FA, but it has helped me gain some perspective and determine what is important in life — and who the important people in life are.”

The entire In Focus: Friedreich’s Ataxia report, can be downloaded as a printable PDF from this page, as well as from the Friedreich's ataxia disease page.

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