Historically MS was thought to primarily affect Caucasians, particularly those of Northern European descent, but more is being learned about other racial and ethnic populations. Studies of military personnel and subscribers of Southern California Kaiser Permanente healthcare system both indicate a higher incidence (the number of people NEWLY diagnosed with MS within a given period of time) of MS in African Americans than previously thought. More research needs to be done to understand if this is also true for individuals outside of those two groups studied, and what is the cause of this rise in cases.
There’s some evidence that MS can manifest differently and be especially active in African-Americans:
- more frequent relapses and poorer recovery
- more visual symptoms
- more walking problems
- more balance and coordination problems
- more problems with thinking
- earlier disability onset
The Black MS Experience Summit is a an annual interactive, three-day virtual event. During the program, the Black MS community has a chance to forge powerful connections, learn from leading scientific and healthcare experts and give voice to the unique needs of our community. Learn more and see resources and videos from previous events.
Participate in medical research
Research on who gets MS, prognosis, and which treatments are most effective are critical to disease management. Medical research on MS has historically not included people of ethnic and racial minorities. To best inform African Americans with MS about their disease, it is essential that they participate in research. Otherwise, recommendations are based off conclusions from studies of other ethnic groups and races.
Different populations are being studied to learn why some ethnic groups develop MS at higher rates than others. The MS Genetics Group is asking for the donation of a blood samples from African-American individuals with MS and controls without MS. It is not required, but the participation of certain family members is preferred as well.
To accurately estimate the number and geographic distribution of African American people diagnosed with MS in the United States, the existence of barriers to access to care, and strategies that are needed to undo inequities of access the National African Americans with MS Registry has been created.
Learn more about how you could be Making a Difference in MS Through Research in this article from the MS Minority Research Engagement Partnership Network.