Moyna John speaks to her diagnosis with MS and how she creates her best life living with MS

When she was diagnosed at age 16 with MS, Kamilah Martin-Proctor found herself at a loss when it came to figuring out the path forward for someone like her with the disease. She was a young African-American woman in high school—yet all the information she could obtain about MS came from Caucasian women, married with children, who could not relate to Martin-Proctor’s life experience. “Nobody could tell me how these medications and studies affected people of color,” she commented. So, in response, she started a small support group and began doing strategic outreach. The group is called the Martin MS Alliance Foundation (www.manyfacesofms.org). MS Insight’s new video, titled “MS in Communities of Color” features an interview with Proctor-Martin. She talked about the different outreach that her group provides. There are four areas, each offering different services: Equal Access Education – Providing key information about new medications and treatment for MS patients, particularly relevant to people of color; Careers, Not Jobs – Encouraging members to pursue their career dreams and not be held back by their disability; Accessible Communities – Making sure individuals have access to social and cultural events, while managing their illness; Emergency Base - Furnishing information to members about how to manage their MS during emergencies, such as the COVID-19 pandemic. Martin-Proctor engaged in a lively discussion on the video with MS Insight staff. She noted that people of color—including African-Americans, Hispanics, and those of Middle Eastern background—often have a more severe course of MS than white people, and scientists are not sure why. She hypothesized that it was at least partly due to socioeconomic factors, stress and anxiety and “living in a society that is not optimally welcoming.”

In this video Kamilah Martin- Proctor shares her insights with us about MS in communities of color.