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Online Support Helps Women With ALS

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Duke Health News 919-660-1306

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.
There are currently 46 registered members.

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