Published: Apr. 6, 2006
Updated: Apr. 8, 2006
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By Duke Medicine News and Communications
DURHAM, N.C. -- People with chronic disease can find empathy and learn coping skills through support groups, but sometimes the disease itself makes traveling and talking with others difficult.
A new online support group established by Duke University Medical Center for women with Amyotrophic Lateral Sclerosis (ALS), a progressive neurodegenerative disease, connects people around the world without the burden of leaving home. ALS affects voluntary muscle control, and people lose the ability to move their arms, legs and body as the disease worsens.
"People with ALS may have a hard time leaving the house because they are in a wheelchair or on a ventilator. Some people may have slurred speech and may be a little insecure about joining a live group," said Selena Helms, a clinical speech pathologist with Duke's division of speech pathology and audiology.
Helms notes that women may have different responsibilities and issues than men, so talking with other women with ALS can provide significant emotional support. "They find solutions to different problems that arise, or information about new treatment. Just having other women who can identify with them is important," she said.
Sarah Witt, a Raleigh, N.C., resident, said the support helps her cope with the disease. "When it's difficult to talk and walk and impossible to drive, it does change the way you interact with the word. This support group and the others I participate in allow me to stay engaged socially, to feel I have friends I can relate to and to know that I'm not alone in this."
ALS, also known as Lou Gehrig's disease, affects as many as 20,000 Americans at any time, according to the National Institutes of Health. About 5,000 new cases per year are diagnosed in the U.S., generally in people 40 to 60 years old. Men are more often affected than women.
The fatal disease attacks the nerve cells that control voluntary muscles – those that move the limbs and hands, and even the diaphragm, which controls breathing. The muscles gradually waste away, atrophying from lack of use.
"I think support groups are essential for patients and caregivers dealing with any debilitating disease. For people with ALS, their life is ending and that's a lot to deal with. There's a high incidence of depression," Helms said.
Online support can be especially important for women with the disease because ALS more commonly strikes men, Helms said. "I had one woman tell me she was the only woman in her support group."
The message group is restricted to women diagnosed with ALS. To join, visit http://health.groups.yahoo.com/group/womenwithals. There are currently 46 registered members.