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MS in the Black Community: Looking for Answers

Medically Reviewed by Carmelita Swiner, MD on April 15, 2022

At one time, doctors thought that multiple sclerosis (MS) happened mostly among young white women. That turned out not to be true. People of all ages, genders, races, and ethnic backgrounds can develop MS. In fact, people of African descent, and especially Black women, may have a higher risk of developing MS than people of other backgrounds. If you’re Black, you may also have different symptoms and respond differently to treatment than people of other races. Understanding how MS affects the Black community can help you find more effective treatments and connect with people with similar experiences.

What Is Multiple Sclerosis?

Your nerves are surrounded by a protective layer called myelin. In MS, your immune system attacks the myelin around the nerves in the brain and spinal cord. This can cause a wide range of symptoms from vision changes and dizziness to fatigue, problems with walking and balance, pain, muscle stiffness, and tremors.

Most people who get a diagnosis of MS have relapsing-remitting MS (RRMS), in which symptoms come and go as the disease goes through phases of activity and inactivity. When the disease is inactive, called a remission, symptoms lessen and sometimes even go away (remit). When the disease is active, symptoms get worse, or relapse.

In some cases, RRMS progresses into secondary progressive MS (SPMS), in which the relapse/remit cycle becomes a gradual worsening of symptoms. This can happen over many years or just a few.

About 1 in 10 people with MS have primary progressive MS (PPMS), in which symptoms do not come and go. Instead, they get steadily worse. People with PPMS are usually diagnosed after 40. As with other forms of the disease, symptoms vary from person to person.

How Common Is MS in the Black Community?

While most people diagnosed are white, Black people are at higher risk for the disease than doctors previously believed. Young Black women have the highest risk of any group, but young Black men can also develop it. Hispanic American people and Asian American people are less likely to get MS than Black or white people.

Doctors are not sure why this is. Some researchers believe that rates of MS are rising in the Black community due to a combination of changes in the environment, traits that get passed from one generation to generation, and how people live and work.

Certain genes seem to play a role in developing the disease. While these genes are more common in people whose ancestors are Northern European, many people who identify as Black have both European and African ancestors.

Low levels of vitamin D may increase the risk of MS. Your skin makes vitamin D when exposed to the sun. This might explain why MS is more common in areas located farthest from the equator. In the U.S., the disease is more common in the Northeast and Midwest, compared to the South and the West. People with dark skin are more likely to have low levels of vitamin D, but doctors do not know how this relates to the risk of developing MS or if this association is true for people with dark skin.

Other risk factors for MS include smoking and obesity.

But even with all these factors, some believe that the way our society is set up puts a heavier burden on Black people, which may raise your risks of many long-term (chronic) conditions, including MS. Research into MS has mostly looked at the disease in people who are white, which has led to gaps in knowledge about how the disease affects the Black community.

Does MS Affect Black People Differently?

MS can affect Black people differently than whites. You may develop more severe symptoms sooner after diagnosis, especially when it comes to vision and walking. For example, Black people with MS may need to use a cane sooner than white people diagnosed at the same time. Because of this risk, finding effective treatment early is even more important. Black people with MS may also have more frequent relapses and may become sicker faster.

Some symptoms that are more common in Black people with MS include:

  • More eye and vision symptoms, such as blurred or reduced vision
  • Earlier transition from RRMS to SPMS
  • Rapid loss of myelin in the spine and brain
  • Problems with balance and coordination

How Do Doctors Treat MS? Does Treatment Differ for Black People Who Have MS?

Treatments for MS are called disease-modifying therapies (DMTs). These include medicines, including interferons and monoclonal antibodies, that you take by mouth or receive in a shot or infused through a vein.

Early treatment may help slow down the progression of the disease. Doctors will recommend treatment based on your symptoms, the type of MS, and other factors. Because Black people often have more relapses and their symptoms worsen more quickly, doctors may decide to use stronger medications sooner, even though those medications may come with more side effects.

Some treatments for MS don’t work the same in Black people with the disease compared to white people. For example, if you’re Black, you may not respond to treatment with interferons, which is a common early treatment for MS.

If you are of West African descent, you have a higher risk of another condition called neuromyelitis optica spectrum disorder (NMOSD), which has some similar symptoms as MS. It’s important to figure out which one you have because some treatments for MS can make NMOSD worse.

Until recently, most research studies included mostly white participants. Researchers are now trying to make it easier for people of different races and backgrounds to participate. But much of our medical knowledge is based on incomplete knowledge of how different treatments affect diverse communities, and this contributes to the differences in how MS and other conditions affect the Black community.

Living a Full Life With MS

Finding a doctor who takes time to listen to you and accurately diagnose your condition is an important part of getting the care you need. If you don’t have a doctor, or if your doctor doesn’t diagnose your symptoms, that can lead to delays in care and worse symptoms. Some believe that difficulties finding a reliable doctor or health insurance is part of the reason that Black people with MS may have more severe symptoms.

In addition to taking the medicine and other therapies prescribed by your doctor, developing healthy habits can help you live a full life with MS. Choosing the right foods can help keep your energy up in times of fatigue. Staying active with walking, yoga, swimming, or other gentle exercises can help build strength and lift your spirits.

Having a chronic illness adds stress on top of the usual life challenges. The ups and downs of symptoms can make it difficult to plan ahead or participate in fun events. Having a way to manage stress – through prayer, meditation, exercise, and connecting with friends and family – is another way to live your best life with MS.

Show Sources

SOURCES:

National Multiple Sclerosis Society: “Living Well with MS: A Guide for Black Americans,” “Who Gets MS?”

Practical Neurology: “Multiple Sclerosis in the Black Population of the United States.”

Momentum Magazine: “Obstacles to Access.”

UpToDate: “Disease-modifying therapies for multiple sclerosis: Pharmacology, administration, and adverse effects.”

Multiple Sclerosis: “Race and Ethnicity on MS presentation and Disease Course: ACTRIMS Forum 2019.”

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