How Multiple Sclerosis Affects Black Women

Multiple sclerosis (MS) is a progressive condition that affects the brain and spinal cord. According to the National MS Society, about 1 million people in the United States live with MS — and 74% of those people are women. Of those, Black women may experience worse symptoms, faster disease progression, and earlier disability than women of other races.

Historically, MS was thought to affect white people in much greater numbers than people of other races. However, research now suggests that MS affects Black people at the same rate as white people. If you have received an MS diagnosis and are unsure about your treatment options and outlook, it’s best to talk with your doctor. They can help you find a treatment that slows down the progression of the condition and maintains your quality of life.

Black women and MS

MS develops when the body’s own immune system attacks healthy cells in the brain and spinal cord. Specifically, MS affects a part of the nerve known as the myelin sheath. The myelin sheath acts as an insulator for the nerve, helping transmit information quickly back and forth between the brain and body. When the sheath is damaged by a condition such as MS, that flow of information is interrupted. This results in MS symptoms.

The exact cause of MS isn’t known. However, you could be at higher risk if you have a parent or sibling with the condition. Black people usually receive a diagnosis between the ages of 20 and 50 years.

For Black women, receiving an MS diagnosis can be a time consuming, difficult process. Many healthcare professionals still mistakenly believe that MS is a “white person’s disease” and misidentify symptoms as those of other medical conditions. It is possible that diagnostic delays contribute to poorer outcomes for Black women, even after treatment is started.

While each person’s experience is different, common symptoms of MS include:

• bladder and bowel problems
• dizziness or vertigo
• emotional changes
• fatigue
• numbness or tingling
• spasticity
• vision problems
• walking difficulties
• weakness

The experiences of Black women with MS often differ greatly from those of women in other racial groups. Symptoms are often worse and start earlier. They are also more likely to relapse, or come and go over time.

In general, compared with white individuals, research indicates that Black women are more likely to experience:

• a more aggressive disease course
• a faster rate of tissue loss in the brain itself
• earlier disability
• inflammation of the spinal cord
• more balance and coordination problems
• more frequent relapses
• more visual symptoms
• poorer outcomes, even with treatment

Because of these risks, healthcare professionals recommend starting MS treatment as early as possible to help delay the progression of the condition. However, some research suggests that some treatments do not work as well for Black women as others. It is not yet known why.

Living well with MS

Due to its unpredictable nature, living with MS can be challenging. One of the best things to do is build a network of support around yourself. This network should include healthcare professionals familiar with MS and the work it takes to manage the condition. It’s very important to work with a doctor you trust and who is familiar with MS in Black people.

Research indicates that African American people with MS are less likely to see a neurologist specializing in MS or receive care at an MS clinic. Connecting with a doctor who specializes in your condition can improve your overall care and ensure that you are receiving the more appropriate treatment. Finding a doctor with experience treating MS in Black people can be key as well. Directories such as Blackdoctor.org and Huedco.com can provide you with doctors trained to treat MS in People of Color. You can also call your insurance company to ask for a list of covered doctors who have been trained in cultural competence.

Other than your doctor, your medical support network can include physical and occupational therapists, social workers, and patient navigators. Organizations like the National MS Society can help connect you with an MS Navigator, who is a person who can share information, resources, and support with you.

There are also a variety of support groups, both online and in person, specifically for people living with MS. Social media is a great place to tap into these groups. Also, many MS organizations now focus on the unique experience of Black people who receive a diagnosis. Events such as the 2022 Black MS Experience Summit help connect the Black MS community with other individuals with MS, doctors, and researchers. 

Additionally, don’t forget your friends and family. These people can be the cornerstone of your support network. They may help you with daily activities, such as cooking or cleaning. Others might be more emotionally supportive. No matter when you received a diagnosis, leaning on your family and friends can make a dramatic difference in your quality of life.

MS does seem to affect Black women differently than women of other races. Further research is necessary to find out exactly why. However, your doctor can help you find resources for better living with MS.