A Full Life Is Still Possible with Multiple Sclerosis
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There are approximately 400,000 people with multiple sclerosis (MS) in the United States today with 200 new patients diagnosed every week.
“No one 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 include:
• Vision problems
• Numbness and tingling in one’s hands and feet
• Difficulty thinking
• Bladder and bowel problems
• Weakness or poor coordination, and
• Muscle rigidity or stiffness
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 environment.
“Several studies show strong evidence of a genetic component to MS,” McFarland said. “Also, researchers discovered a genetic marker for MS in 2007.”
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 their disease.
Source: Society for Women’s Health Research (SWHR)
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