Wilmington man, one of 18 in US with rare disease, fights back - WSFA.com Montgomery Alabama news.

Wilmington man, one of 18 in US with rare condition, fighting back

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WILMINGTON, NC (WECT) – Adam Zwan, 25, is one of 18 people in the United States to be diagnosed with Wolfram Syndrome, a rare disease that steals the vision, hearing and before the age of 30 - the life - of those who have it.

We first introduced you to Zwan last month, as film crew followed him as part of a documentary on the disorder.

While our cameras were there, Zwan started experiencing severe abdominal pain and was rushed to the hospital.

He spent a week there. Doctors advised him not to eat or drink during his hospital stay – to help slow nerve damage the disease is causing to his digestive system.

He lost 20 pounds.

But now, Zwan is almost back in fighting shape, using taekwondo to help block the progression of the disease.

"Martial arts, it's helping me stay physically and mentally strong," Zwan said. "It helps me deal with the day to day struggles, psychologically; it gives me the right mind set."

Zwan is hoping to fight off the condition, with physical activity and a strict diet.

He said he is in better shape than others his age who he's met who also suffer from Wolfram Syndrome.

Wednesday night, we caught up with Zwan while he was teaching a martial arts class.

At the classes, Zwan doesn't just teach the young ones how to kick and punch; he shows them the definition of courage.

"It allows me to enjoy what time I do have left," he said.

He also said staying active helps him cope with his own mortality.

"In my mind, it's easy to deal with simply because once you come to terms with it and say - that is the way it is, that's the hand you were dealt, and it's my responsibility to make the best of it and enjoy every day that I have."

The documentary featuring Zwan is still in the works. The filmmaker hopes the movie will help raise money for research to fight the disease, as all profits from the movie will be given to the Ellie White Foundation, which raises money for scientific research for Wolfram syndrome and other rare genetic disorders.

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