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Monday, February 22, 2021

How Multiple Sclerosis Affects Black People


Once thought to be a White person's disease, multiple sclerosis also impacts Black people—and their experience differs. These experts explain why.

      


Since her diagnosis, Lisa Cohen has raised awareness of multiple sclerosis in the Black community.  Photograph by Marius Bugge


When Lisa Cohen first started noticing numbness in her left hand in 2000, she chalked it up to the data entry she was doing for a promotional tour for rock bands she managed at the time. “I figured I had just pinched a nerve or something, and after a while it went away,” recalls Cohen, who is Black and lives in New York City.

But about six or seven months later, she started noticing problems with her vision. “I was booked to go on a photography trek to Morocco, and I couldn't see out of my shooting eye,” she says. “I had to use the other eye to take pictures. Then a couple of months after I returned, I woke up and the whole lower half of my body was numb. I could move, but I wasn't really feeling things.”

Her primary care physician immediately referred her to a neurologist, who diagnosed Cohen with multiple sclerosis (MS). It didn't come as a complete surprise to her. “My father's first cousin had MS, and occasionally he would come to visit,” she says. “I remember him walking with a cane and kind of shuffling. In grammar school I would always do the MS readathon fundraisers—where people would sponsor you to read books and the money would go to the National MS Society—because of my dad's cousin.”

For Cohen, the diagnosis was almost a relief because she had feared something far worse as autoimmune diseases run in both sides of her family. Her mother had rheumatoid arthritis and scleroderma, which causes hardening of the skin and connective tissue. “My mother died five years after being diagnosed with scleroderma, and that's all I was thinking of at first,” Cohen says. “When I learned it was MS, it wasn't great, but I knew it wasn't going to kill me in five years.”

As Cohen, who is now 51, became more involved with the National MS Society, she encountered people who were surprised to learn that Black people get MS. “It seems like it's considered a White person's disease,” she says. “That never occurred to me because of my family experience. One of the things I've been working on with the National MS Society, with events like its Black Experience Summit, is combating that perception and raising awareness in the Black community about MS and the treatments and resources available.”


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