Five Resources for African-Americans Living With MS
I have written before about my multiple sclerosis advocacy on behalf of African-Americans. My focus is primarily on the equity in research, but that doesn’t mean my support ends there. There are social resources available that can provide much-needed emotional, mental, and spiritual support. These opportunities to meet and talk to other Black people with MS are invaluable.
MS is not just for whose who are white
From its discovery until today, multiple sclerosis has been seen as a chronic illness that mainly affects people who are white. This supposition was turned on its head nearly 8 years ago. In 2013 American Academy of Neurology wrote in its press release about a recently released study, “The study found that African-Americans had a 47 percent increased risk of MS compared with Caucasians.”1 As this knowledge continues to slowly filter down to neurologists and other diagnosticians, African-American multiple sclerosis patients are left to fend for themselves to find resources that are focused on our unique needs.
5 resources for African Americans with MS
I want to help a bit in that process by listing five places where African-Americans can find the social support they need at a challenging time. This list is thin, but I have high hopes that it will expand over time.
- African Americans living with MS Facebook group - Description: "Informative, interactive and hopefully inspirational group expressly for the support of African Americans living with multiple sclerosis." This group has a private membership.
- African Americans with Multiple Sclerosis Facebook group - Description: "This group is a space for African Americans with Multiple Sclerosis to discuss, chat and help each other deal with MS. We also share med information, natural treatments, supplements, healthy food and diets. Multiple Sclerosis affects African Americans differently than other races. It is more aggressive in us and leads to greater disability than other groups." This group has a private membership.
Multiple Sclerosis: You Are Note Alone
MS: Y.A.N.A. - Description: "MS Y.A.N.A. supports the emotional, physical and practical needs of African Americans and others living successfully with multiple sclerosis, helping them remain vital, productive members of our community."
We Are ILL
We Are Ill website (Black woman-focused) - Description: "We Are ILL is a 501(c)(3) patient advocacy organization with a mission to redefine what sick looks like for Black women living with multiple sclerosis (MS)."
National Multiple Sclerosis Society Black Experience Summit
Black MS Experience Program Series - Description: "Being Black with MS carries unique challenges and experiences – from scientific and clinical differences in the disease itself to inequities in the healthcare system and more. The Black MS Experience Program Series is an opportunity to connect with others who understand the distinct experience of life with MS as a Black person."
Hopefully, this tiny list will help one of my fellow African American MSers to find friendship, support, and compassion from those in our community who understand our unique perspective.
Did you experience any type of flare-up after receiving a COVID-19 vaccine?