Life with MS

Exploring Our Differences: African Americans and MS

By Mizti Williams, M.D.

When people think of a face associated with MS, they often picture a Caucasian woman. Although the majority of MS cases are still reported in that population, there are many other faces of MS, including those of African American men and women. Exploring how MS affects these various faces may provide important keys to understanding this disease, so we may work towards finding a cure.

During the past 10 years there has been an increasing body of scientific literature examining patterns of disease, MRI findings, and prognosis in Caucasian versus African American populations with MS. We still have much to learn.

Why it is important to discuss differences and continue research in this area? We know that MS is not directly inherited, but genetics certainly play a role in susceptibility to the disease. Multiple genes have been identified that are associated with increased risk of MS, but we still have not identified one specific source. Because the incidence is lower in African Americans, it raises the question whether genetic or environmental factors contribute to this finding. Unfortunately, many of the clinical trials examining etiologies and therapies suffer from a great lack of African American participation.

Barriers to treatment and understanding

The lack of clinical trial enrollment may be due to certain factors. One potential factor is access to physicians and centers that are participating in trials. A study assessing use of neurologists and specialty centers by people with MS revealed that African Americans being cared for in these settings were more likely to be treated with alternative and experimental therapies. It also suggested that African Americans were less likely to be cared for by a neurologist or a MS specialty center.

Other barriers to access may include stigma attached to participating in clinical research. The infamous Tuskegee Syphilis Experiment was a 40-year study following the effects of late stage syphilis in untreated African Americans. Unfortunately, treatment was withheld from these people once it became available. As a result, most of them died from a treatable disease. Although the study ended in 1972 and a formal apology was made for this act, its effects have been long-lasting. A sense of mistrust certainly accounts for some part of the low number of African American patients involved in research.

What we know about MS in Black Africans

Despite the low clinical trial involvement, there are some things that we have learned about MS in African Americans as well as MS in black Africans. Although MS has been described in medical literature since the 1800s, the first well-described case of demyelinating disease in a black African was not until 1987. 

The occurrence of MS in black Africans is rare. Only 12 cases had been published in South Africa by 1994. Environmental factors may play some part in this, but would not account for the higher incidence of disease in Africans of European descent.

The more common form of demyelinating disease seen in black Africans is neuromyelitis optica, which primarily involves the optic nerves and spinal cord and is a distinct entity from MS. The course of disease is also more severe in black Africans, with case reports suggesting poorer recovery of vision from optic neuritis.

Trends in African Americans with MS

The trends discovered in black Africans with MS have been consistent to some extent in the African American population. The higher incidence of MS in African Americans may partially be due to environmental factors, but mixing of races also likely plays some role. Studies have shown that African Americans have more involvement of the optic nerves and spinal cord than their Caucasian counterparts. There are also variations in disease course, namely a more aggressive course of disease in African Americans with increased relapses and shorter time to ambulatory disability.

Although African Americans appear to come to diagnosis earlier, this may be explained by more severe symptoms at onset. A study of nursing home residents with MS suggested a trend toward increased cognitive deficits in African Americans when compared to Caucasians. There is also some evidence that this population may not respond as well to some disease-modifying therapies.

The importance of being counted

Our quest for more knowledge about MS in African Americans will continue, along with efforts to raise MS awareness in the African American community. The risk of increased ambulatory disability and a more aggressive disease course reinforce the importance of regular follow up with a neurologist and adherence to treatment regimens.

There is a dire need for more enrollment of African Americans in clinical trials to determine if there are alternate treatment approaches needed and if any other factors causing severe progression may be ascertained. Knowledge of all the faces of MS through continued research will allow us to gain a better understanding of the disease and work toward a cure.

Stand up and be counted

Developed by the Consortium of MS Centers (CMSC) in 1993, the National American Research Committee on Multiple Sclerosis (NARCOMS) Registry is an active database of over 34,000 individuals who have MS. It provides a way for individuals with MS to confidentially provide detailed information on their course of disease as well as their treatment. Increasing the enrollment numbers in the registry will not only help to further research efforts (and eventually find the cure), but it will also raise awareness about MS.

Enrollment involves filling out a questionnaire and mailing it or submitting it online to the registry administration office. The questions asked are regarding demographic information, MS-related medical history, immunologic and symptomatic therapies, health care services used, and a series of patient-assessed performance scales that reflect disability in eight domains of function.

Once registered, you will be informed of recent studies and their results and you will be notified of clinical trials in which you may be eligible to participate. To register online go to:  

To request a questionnaire by mail, write to: NARCOMS Global Patient Registry, RPHB 414, 1530 3rd Avenue, South Birmingham, AL 35294-0022.

Mitzi Williams, M.D., is a neurologist and medical director of the Augusta MS Center at MCGHealth Center. She is also an assistant professor in the neurology department at the Medical College of Georgia.

(Last reviewed 5/2010)