MS as a Black Person: You’re Not Alone

Multiple sclerosis is often thought of as a white person’s disease. But people of other races are just as likely to have MS — and less likely to receive equal treatment.

MS as a Black Person: You’re Not Alone

While MS was long-believed to be a white person’s disease, newer research says it is just as common in Black people.
Medically Reviewed

M ultiple sclerosis (MS) has long been thought to be most prevalent among white people of northern European descent. MS also occurs in most ethnic groups, though, including Black Americans.

Yet, for many people in the Black community, the path to an MS diagnosis can be lengthy and complicated.

Racial Disparities in MS

A couple of factors may be at play in these discrepancies, according to Kalina Sanders, MD, a neurologist with Baptist Neurology in Jacksonville Beach, Florida.

First are “social determinants of health, including health care access and quality,” she says. “African Americans are less likely to be seen by a neurologist who specializes in multiple sclerosis or at an MS center.”

What’s more, adds Dr. Sanders, “There are historical biases among patients and healthcare providers.”

But things are evolving, she emphasizes. “Our understanding of social determinants of health is helping to address the disparities. It is being addressed in how we do research, train clinicians, and treat patients.”

Impact on MS

Research shows that early, aggressive treatment with disease-modifying therapy (DMT) improves MS outcomes. DMT helps prevent the development of new MS lesions, reduce the risk of relapse, and slow the decline in disability, explains Sanders.

But, for people in the Black community with MS, “The delay in diagnosis results in a delay in treatment,” Sanders adds, “which can result in an increased likelihood for earlier and more severe disability long term.”

The Role of Self-Advocacy

If you’re living with MS, advocating for yourself ensures you’re getting the attention, care, and assistance you need (and deserve). After all, you know your body better than anyone else, making you your own best advocate in matters pertaining to your health.

And when it comes to self-advocacy, education is the first step. “All patients, including African American and Black patients, are better advocates when they are educated about the disease,” says Sanders. “This education can come from credible websites, patient advocacy organizations, and healthcare providers.”

Learning as much as you can about MS can help you understand what you’re dealing with better.

Additionally, you should continue to seek care and ask questions until you are satisfied with the answers,” adds Sanders. Don’t stop until you feel your needs are being met.

Pushing for More Equality in MS

Since 2005, there’s been an increase in initiatives for awareness and education around racial inequities in MS. “A lot of efforts are under way to address the disparities in MS research and care,” says Sanders.

How to Make a Change

Sanders offers some simple but powerful suggestions for helping move the needle toward greater equality for Black Americans with multiple sclerosis:

  1. Get involved with MS organizations. “This is an important step to increase knowledge and awareness [of racial disparities],” says Sanders. For example, the National Multiple Sclerosis Society offers fundraising opportunities and other events in an effort to advance MS education and research.
  2. Sign up for the National African Americans with Multiple Sclerosis Registry. All you have to do is fill out an online form. “This will help us gather more data and information about the disease’s impact in African Americans,” she adds.
  3. Consider enrolling in a clinical trial. “Let your healthcare provider know you’re interested and willing to participate in clinical trials,” Sanders advises. “Ask your neurologist if there are any studies you may be a candidate for.” You can also search for trials with open enrollment through the National Multiple Sclerosis Society’s clinical trial finder.