There are approximately 400,000 people with multiple sclerosis (MS) in the
United States today with 200 new patients diagnosed every week.
knows what causes MS," said Phyllis Greenberger, M.S.W, president and CEO of the
Society for Women's Health Research, a Washington, D.C. based advocacy
organization. "We do know that it is at least 2-3 times more common in women
than in men."
Greenberger addressed congressional staff members on
Capitol Hill at an educational briefing sponsored by the Society and the
National Multiple Sclerosis Society on June 24.
"We regularly hold
briefings for members of Congress and their staff," Greenberger said, because
their decisions determine how many federal dollars are devoted to searching for
new treatments and cures.
Multiple sclerosis is an autoimmune disease
that affects the central nervous system (CNS), which is made up of the brain,
spinal cord and optic nerves.
"Normally, the immune system defends the
body against foreign invaders, such as viruses or bacteria," said Heidi Crayton,
M.D., medical director of the MS Center of Greater Washington and an assistant
professor of neurology at Georgetown University Hospital. "Instead, with the
case of MS, the body's immune system attacks the nerves."
Crayton said MS
is an inflammatory demyelinating disease of the CNS. In simple terms, that means
MS causes inflammation throughout the CNS, which damages the myelin sheath, the
material that surrounds and protects your nerve cells. This damage slows down or
blocks messages between your brain and your body, leading to the symptoms of
MS.The symptoms of MS can vary greatly from patient to patient
depending on which part of the CNS has been damaged. Symptoms can
-- Vision problems
-- Numbness and tingling in one's
hands and feet
-- Difficulty thinking
-- Bladder and bowel
-- Weakness or poor coordination, and
-- Muscle rigidity
Henry McFarland, M.D., chief of neuroimmunology at the
National Institute of Neurological Disorders and Stroke, spoke at the briefing
about advances in MS research. Researchers have decided the main elements that
contribute to an individual developing MS are the individual's genetics and
"Several studies show strong evidence of a genetic component
to MS," McFarland said. "Also, researchers discovered a genetic marker for MS in
A positive test for this gene suggests that a person is
susceptible to developing MS. It does not mean the person will definitely
receive a diagnosis in the future.
Sarah Keitt, of Woodbridge, Va.,
provided a patient's perspective on MS. In April 2000, she was diagnosed with
relapsing-remitting multiple sclerosis, which is one of four internationally
recognized forms of MS.
"When I received my diagnosis of MS," Keitt said,
"I felt that life as I knew it was coming to an end. As time went on, I
discovered I was right. My life isn't the same as if I didn't have MS, but it is
just as fulfilling."
As a patient advocate with the National Multiple
Sclerosis Society, Keitt often participates in forums to educate the public
about MS. "I don't stand up and give a sob story about living with MS," she
said. "I like to focus on the fact that I have a wonderful, supportive husband,
two beautiful daughters and a very full life."
Because of improved
methods to limit disability, such as physical therapy, and treatments for
complications of disability, the life expectancy of individuals with MS is now
nearly the same as that of unaffected people.
Crayton noted that the FDA
has approved five medications specifically for MS. "My patients and I work
together to find the treatment options that work best for their specific
symptoms," she said.
"I tell my patients to make their life decisions as
though they didn't have MS," Crayton said, emphasizing that patients can have
full, productive lives, while working with their health care providers to manage
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