More MS news articles for Jan 2002

Fear of disclosure limits treatment for multiple sclerosis

1.6.2002 00:24
Chicago Tribune

Four years ago Dolores Bopp Potterton went momentarily blind while speaking to more than 700 people at a productivity seminar. She regained her sight but didn't mention the unnerving incident to family. Nor did she tell her doctor.

When Bopp Potterton was later diagnosed with multiple sclerosis, a non-fatal, incurable neurological disease, she finally told her husband and children about the whiteouts, dizziness and numb limbs that she had battled for the last two years. But only recently has the Naperville, Ill., mother discussed her own situation with work clients.

Others are far more secretive about having MS, known as the "hidden" or "invisible" disease, partly because symptoms such as slurred speech, muscle weakness, fatigue, vision disturbances and tremors can mysteriously come and go. Nearly 40 percent of MS patients said they had covered up their MS diagnosis from family, friends and colleagues because they were concerned about the consequences, according to a Harris Poll study released earlier this year at the American Academy of Neurology annual meeting.

"There are probably about 10 or 15 people you already know who have MS but they haven't told you because of how you might react," said Dr. Fred Nour, a neurologist at Central DuPage Hospital in Winfield, Ill. "A great majority get old and die of something else. A lot of people don't even know they ever had it."

For the estimated 400,000 Americans battling the chronic illness, public disclosure is a complicated issue given the baffling nature of the disease. Despite protections offered by the Americans with Disabilities Act, workplace discrimination and denial of health-care coverage is a very real threat, even though many people with MS lead full, functional lives and can go months or even years without symptoms.

Often it's hard to tell if people have the disease at all; they hide it because they can.

"I don't want . . . people to feel sorry for me or to think I can't do something because I'm ill," said Connie Hatland, 34, of Leland, Ill., who kept her news from her mother and brother for years. "I want people to see me living a normal life. I know my limitations and I stick to them."

BUT THE FEAR OF disclosure often leads to lack of treatment, according to Dr. Frederick Munschauer of the Baird Multiple Sclerosis Research Center at Buffalo General Hospital in Buffalo, N.Y. According to the Harris Poll, MS patients also are hiding their diagnosis from themselves; 42 percent of people with MS receive no treatment for their condition, which is especially startling given the availability of drugs that can slow the progression of the disease. Some patients believe that if they have no symptoms, the MS isn't progressing, which doctors say isn't necessarily true.

"People definitely hide it from loved ones; it changes the relationship," Munschauer said. "But anytime you have a medical condition kept secret, it limits the kind of support others can give to make life more successful. A key to harnessing MS's deterioration process is to begin treatment early."

Considered a young person's disease, MS generally strikes women twice as often as men and usually those between the ages of 20 and 40. About 40 percent of MS patients said their diagnosis has had a major impact on their outlook about marriage and long-term relationships, according to the Harris Poll. Half of the patients have stopped working.

Ellen Scherrer had MS in her 30s when she began dating the man who became her husband, but she never told him. In fact, she would have kept it from him as long as possible, she said, but a friend outed her. "The hardest thing for me to do is to say, 'I have MS,' " said Scherrer, 45, of Crystal Lake, Ill.

"Younger people are trying to form relationships and feel like they're dragging around this tremendous liability," said Dr. James Stewart, a clinical psychologist at the Multiple Sclerosis Clinic at Rush-Presbyterian-St. Luke's Medical Center. "All of us bring into our adult years questions and scars from childhood, such as how perfect we want to be, how desirable and how lovable. Being told you have MS validates all those fears. It can be a real corrosive thing to one's self-esteem."

It also can be an occupational hazard. Actor David Lander, who played Squiggy on the television show Laverne and Shirley , kept his MS diagnosis a secret for 15 years but now speaks to patients and encourages early treatment. In Hollywood, Lander said, it's better to be mistaken for an alcoholic rather than someone with MS.

Today he isn't convinced MS patients need to broadcast the news. "My first advice is 'don't tell anyone,' " said Lander, author of Fall Down, Laughing: How Squiggy Got Multiple Sclerosis and Didn't Tell No One. "I don't know what the advantage would be if you're not showing any symptoms."

WHETHER OR NOT TO disclose is a heavily debated topic of support-group meetings, and the issue was played out on prime-time television. On last season's final episode of NBC's The West Wing, the fictional president, played by actor Martin Sheen, had multiple sclerosis. His failure to divulge his illness threatened to ruin his presidency.

"If anything the (television) portrayal shows people can have MS and function at high levels for long periods and counters the public image of the more severe cases (such as Annette Funicello and Richard Pryor)," Stewart said.

Often confused with muscular dystrophy, MS is caused when inflammation and breakdown occur in myelin, the fatty substance that protects the nerve fibers of the brain and spinal cord. When myelin is destroyed, it's replaced by scars or hardened "sclerotic" patches of tissue. Depending on which nerve fibers are affected, patients experience symptoms from weakness and clumsiness to numbness, visual problems and even emotional and intellectual changes.

In the last decade, new treatments -- Avonex, Betaseron or Copaxone -- have helped lessen the frequency and severity of MS attacks, reduce the accumulation of lesions in the brain and slow progression of disability. A fourth treatment is expected soon, according to Nour at Central DuPage Hospital.

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