In her speech at the Democratic National Convention, Michelle Obama disclosed that her father, Fraser Robinson, was diagnosed with multiple sclerosis in his early 30s. Learn more about the disease in "The Word on Multiple Sclerosis" and "MS Study Reveals Differences in Immune System of Blacks and Whites." These articles are part of Heart & Soul's award-winning series on how MS affects African Americans, including singer Tamia, who was featured in the accompanying cover story. The National Association of Black Journalists recently honored Heart & Soul for the MS series as well as the design of a cover story on Erykayh Badu at its Salute to Excellence ceremony at the Unity conference in Chicago.The Word on Multiple Sclerosis
The Tricky Autoimmune Disease of the Central Nervous System Still Baffles the Medical Community
By Stacy Gilliam
Anne Mari e Johnson's symptoms crept up during a smoke break back in the fall of 2002. She lit up as usual, but could barely hold the cigarette between her fingers. The following day, she experienced a pins-and-needles feeling in her hands, arms and throughout the bottom half of her 5'2" frame.
"I couldn't lift my hands to button my shirt, to hold a cup or a pen," says Johnson, 36, a social services professional in Brooklyn, New York. "I was in such pain. A week later, I couldn't walk." On New Year's Eve, she received the diagnosis--multiple sclerosis (MS). "I was scared to death," says Johnson, who had just finished graduate school at the time. "How am I going to work? Who will date someone like me? Can I have kids? What exactly is multiple sclerosis?"
Desperate for answers, she researched and learned, like more than 400,000 Americans diagnosed today, that MS is an autoimmune disease of the central nervous system. That means it can affect your brain, spinal chord and optic nerves. It isn't contagious or deadly, and what causes it is a mystery. But MS is a disabling, quite fickle disease that can produce loss of vision, numbness, loss of balance and muscle coordination, bowel and bladder dysfunction, and fatigue, among many other varying symptoms, which come and go, lighten up and worsen. At its most debilitating, MS can take away a person's ability to walk, write and talk. In less severe cases, one might feel tired and experience slight mobility issues.
"In most people, it becomes a progressive disease with a downward, slow progression over the years," says John Richert, M.D., executive vice president, research & clinical programs at the National MS Society. "The symptoms may be mild or vague to the point that sometimes the person may ignore them. Or they'll go to a doctor who can't find anything. It may take years to diagnose it."
Or a matter of weeks, as in Johnson's case. The quick loss of physical control can be dumbfounding and traumatic. Feelings of loneliness and depression aren't uncommon, as patients try to adjust to a new way of living. "I went from wearing three-inch high Manolos to someone who couldn't button her shirt," says Johnson, who mostly wears pullovers now.
Cheryl Chatman understands. In 1990, she began losing vision in her left eye. "I started crying because I knew something was wrong with me," says the 42-year-old wife and mother of two who lives in Jacksonville, Florida. While one doctor assured Chatman her vision would return, Chatman insisted on a second opinion from a doctor who nailed the diagnosis as MS. Seventeen years later, she's legally blind. "My vision didn't come back. I only see shadows and silhouettes." At age 19, she lost feeling in the bottom of her feet and the palms of her hands. She didn't know it was MS then.
The Face of MS
Johnson and Chatman are textbook examples of MS patients diagnosed in their early 20s and 30s, in the prime of their lives. But their heritage lumps them in with the seemingly small, but really unknown number of African Americans with the disease. According to the National MS Society, blacks make up just 5 percent of the population. It is one of the few diseases that don't disproportionately affect the black culture, so the research suggests. But some aren't so convinced. "The mentality is that it affects Caucasians," says Kamilah Martin, founder of the Martin MS Alliance Foundation, a Washington, D.C., organization researching MS in communities of color. Martin, 30, felt her first symptom at 16, and was diagnosed a few years later in college. "It's affecting African Americans quietly," she says.
Radio personality Kym Sellers, diagnosed in 1992, believes African Americans are20uncomfortable sharing that they even have MS. She admits to fibbing to some about why she would limp some days. "Either I pulled a muscle or my leg was bothering me" Sellers says. "I got tired of lying."
Studies don't indicate a cut-and-dried reason why African Americans account for fewer cases of MS. But research shows those living closest to the equator are at less of a risk. MS is rare in sub-Saharan Africa, for example, and more prevalent among whites in northern Europe.
"As the gene pool gets mixed in the United States, you find more African Americans with MS," Dr. Richert says. "It also has a tendency to be severe in African Americans. It's a very important issue to understand why that occurs."
Answers will hopefully arise from two studies underway, one a Harvard University project, comparing the genes of African Americans to Caucasians, and a University of California study, which is looking at the genetic background of families with MS. For sure, there are more women--two to three times more--developing MS than men. The reasons for that are uncertain, too. But researchers are currently digging for conclusions, with some studies comparing genetics and common habits of men and women.
Battling MS
There is no cure for MS. But treatment has come a long way. With drugs and therapy, most people with MS can live full, productive lives. Current FDA-approved treatments, such as Avonex and Betaseron, manage symptoms such as pain and fatigue, treat relapses and slow down the disease's affect on the nervous system. All are injected by needle, however, oral treatments are in the pipeline. "We understand a lot more about the disease than we did 10 years ago," Dr. Richert says. "For the first time in history, we have drugs that can slow the damage."
Researchers are excited about recent initiatives geared toward learning how to repair the nervous system and protect the brain and spinal chord, ideas Dr. Richert says sounded like science fiction five years ago. "Available drugs slow the damage," he says, "but don't have much capability to repair the nervous system."
The current slate of drugs do work well, Johnson says. So well that the average person may not know Johnson has MS. The disease has also encouraged her to be proactive with her own health. In addition to a once-a-week injection, she combats her MS with yoga and Pilates, eating healthy and relaxing as often as possible. She ev en gave up smoking. "I believe healing and wellness is body, mind and spirit," she says.
Exercise is good, particularly strength building, which the medical community once discouraged for MS patients for fear it would hasten feelings of fatigue. "If people can be encouraged to engage in a program of strength-building, it can counteract that secondary weakness that comes with a sedentary lifestyle," says Nicholas LaRocca, Ph.D., associate vice president of Healthcare Delivery and Policy Research. Cutting-edge technologies underway include body weight-supported treadmill training, which could retrain the body to walk again for some with MS; specialized seating devices for the wheelchair-bound and a way to enhance the computer experience for those with limitations.
"We realize that with the young generation, at least, the computer is how people obtain information and connect with others," LaRocca says.
Lifestyle changes are necessary for many to manage day to day. Chatman, who also works out, walks with a cane when necessary. She also depends on her teammate of a husband, Len, and minds her limitations.
Johnson rarely wears button-up shirts, she uses cups with big handles and she's extr a careful with her curling iron. She still loves her heels, but goes for the aerosol pump variety now. "You make the best of it. You have to laugh about it," she says. "Your state of mind is crucial in dealing with this."
Spreading Hope
Equally important to finding a cure is embracing those with MS, educating those who don't have MS and letting the world know the disease isn't a death sentence. "I wanted to help people and let them know you can live with it," says Sellers, who in 2002, started the Kym Sellers Foundation, a non-profit organization that has raised $100,000 annually to support those with MS.
Chatman shares that sentiment through the Art of Living With MS (www.alwms.org), a four-year old organization she founded with her husband. The couple organizes life-management programs for couples and families all over the country. "We provide avenues to get together and connect," says Chatman, who recently wrote a book, Six Secrets For Managing MS as a Team. "We talk about issues that we face each day. Sometimes the only people who understand are people who walk in our shoes."
In similar spirit, Johnson juggles speaking engagements, mentors and has written an unpublished book about her first-year experiences with MS called Hey, Me Too. A Sister's Journey with Multiple Sclerosis. "There is somebody out there feeling alone in despair," she says. "But if they see people living with MS, that makes the difference." v
Stacy Gilliam, a Washington, D.C., freelancer, is grateful for the lessons she learned about multiple sclerosis while writing this story.
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