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DeKalb hosts conference on rare disease

Published: Saturday, July 20, 2013 5:30 a.m. CST
Caption
(Monica Maschak – mmaschak@shawmedia.com)
Dr. Adeline Venderver, with the Children's Hospital National Medical Center in Washington, D.C., addresses the members of the United Leukodystrophy Foundation at its annual conference Thursday at Kishwaukee Community Hospital. Leukodystrophy is a genetic disorder that affects a person's central nervous system.

DeKALB – Doug Bermel was one of five children in his family to be diagnosed with leukodystrophy. Today, Bermel, 57, is the only one still alive.

Leukodystrophy is a series of disorders that affect a person’s central nervous system by disrupting the growth of the myelin sheath that insulates nerve cells. Bermel described it as being similar to multiple sclerosis, which he was initially diagnosed with when he was 27.

“I said my grandfather had MS and [the doctor] said, ‘Well, that can’t be, that’s not how it works,’ ” Bermel said. “... After I got diagnosed, we put it together and figured it all out.”

Bermel, a resident of Princeton, Minn., was one of the many people who traveled across the country to attend the annual United Leukodystrophy Foundation’s conference in DeKalb. The foundation was started in 1982 and has its headquarters in an office space at 224 N. Second St., Suite 2, in DeKalb.

“Across the spectrum, there are millions of families in the U.S. affected by rare diseases,” said William Kintner, president of the foundation. “Ours is one corner. We think it’s an important corner, even if it’s overlooked.”

Leukodystrophy is a genetic disorder that’s usually inherited. On the same day Robert Rauner was supposed to be celebrating his birthday in 1993, two of his children were diagnosed with a form of leukodystrophy. A third son was not.

Kevin Rauner was 10 when he was diagnosed, while Paul Rauner was 17. Yvonne Rauner said her son Kevin stopped progressing mentally.

“He couldn’t learn,” Yvonne Rauner said. “He just got less and less aware of things.”

The symptoms a person experiences depends on which part of the brain is affected. Kevin, for instance, had seizures and poor vision. He died at 21. At 36, Paul is still alive, but like Bermel, uses a wheelchair.

Bermel said his leukodystrophy has caused him to lose feeling in his legs and feet, making walking impossible.

But Bermel never misses a conference. Not only is he hopeful that the doctors who are there will find an effective treatment, and possibly a cure, but he also described the Rauners and others as being a part of his family.

“I come to the conference just to see everybody,” Bermel said. “I’ve known them now – I see them once a year. It’s like we’ve known each other forever. ... I like being here.”

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