What African Americans Need to Know About Multiple Sclerosis

Although multiple sclerosis has historically been thought to primarily affect Whites, recent studies show that Blacks in the U.S. are actually more at risk of developing the disease than other racial and ethnic groups.

Multiple sclerosis is a disease that impacts the brain and spinal cord, which make up the central nervous system and controls everything we do. The exact cause of MS is unknown, but research shows that something triggers the immune system to attack the brain and spinal cord, according to the National Multiple Sclerosis Society.

The resulting damage to myelin, the protective layer insulating wire-like nerve fibers disrupts signals to and from the brain. The interruption of those signals causes unpredictable symptoms such as numbness, tingling, mood changes, memory problems, pain, fatigue, blindness and/or paralysis. Everyone’s experience with MS is different, and these losses may be temporary or long lasting.

While research to identify the cause of MS remains ongoing, several factors are believed to contribute to the overall risk. Vitamin D deficiency has been identified as a risk factor. Smoking also plays an important role. Some studies have shown that obesity in childhood and adolescence, particularly in girls, increases risk. There’s even a geographic factor, as MS is known to occur more frequently in areas that are farther from the equator.

Although MS has historically been thought to primarily affect Whites, Black people have an increased risk of being diagnosed with MS compared with White, Hispanic, or Asian patients, according to a study published in May 2013 in the journal Neurology that used patient records from the Kaiser Permanente Southern California health plan. The study also found that the risk for MS is highest in Black women.

These recent studies point out other differences as well. On average, African Americans are slightly older at diagnosis. They’re also more likely to have physical symptoms from the start of their disease compared with Whites. Those symptoms are often limited to the optic nerves and spinal cord, meaning that Blacks experience more issues with vision and mobility, versus other common MS symptoms.

Most neurologists who specialize in MS are aware of these new data, but doctors outside the field may not be, says Dr. Sylvia Klineova, Assistant Professor of Neurology at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at the Icahn School of Medicine at Mount Sinai in New York City in Brain & Life.

“Many doctors practicing today were taught in medical school that MS is rare among Black Americans, and many did not get properly diagnosed based on that belief,” adds Dr. Klineova, who conducts research on Blacks with MS.

The delay in diagnosis is part of the reason Blacks with MS often experience more frequent relapses and worse recovery from those relapses, according to a 2019 review in Current Neurology and Neuroscience Reports.

Access to quality health care is also a problem. “Symptoms often start when people are in their twenties,” says Dr. Annette Langer-Gould, an MS specialist at Los Angeles Medical Center, in Brain & Life.

“That’s a time when many people don’t have health insurance, especially if they are from a disadvantaged population. Then their symptoms are dismissed, there are delays in diagnosis, and when they finally do see a neurologist, that person may not be a specialist.”

In a July 2020 presentation titled “The African Experience and Multiple Sclerosis,” Dr. Mitzi Joi Williams stressed that MS in the Black community is something that isn’t talked about enough—and more research is needed.

A few years ago, she teamed up with a group of other Black neurologists to develop a national database called the National African Americans with Multiple Sclerosis Registry. The goals of the NAAMS are to have an accurate understanding of the number of Blacks afflicted with MS, their potential barriers to care, how this relates to where the patients live, and whether certain medications are of more benefit to them.

The doctors, who specialize in the care of patients with MS, hope to have 20,000 Blacks with MS in the registry by 2023. They also plan to focus their efforts on “[providing] registrants with information about how they can participate in ongoing MS clinical trials,” according Dr. Stanley Cohan, a neurologist who helped developed the registry with Dr. Williams, in Brain & Life.  Clinical trials are a critical component to understanding how potential new treatments may impact people living with MS, which is also why representation in clinical trials is so important, especially for the Black MS community.

Supported by Sanofi, but not responsible for content. Sanofi has ongoing clinical trials in multiple sclerosis. To learn more about their trials, visit MyMSTrials.com.