Black Doctor & Advocacy Group Help Bring Visibility To Black Women Living With MS

Multiple sclerosis (MS) has not been a hot topic in Black communities, but it should be. Nearly one million people are living with multiple sclerosis in the United States, according to a study funded by the National MS Society. That’s more than double what was previously thought.

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Victoria Reese, founder of We Are ILL, and Dr. Mitzi Joi Williams, board-certified neurologist and MS specialist at Joi Life Wellness Group, were recently featured in a special segment on Sherri Shepherd to talk about the disease and the need for visibility.

The first step is awareness, Dr. Williams shared. Many don’t know what is or what to look for.

“MS is an autoimmune disease where the immune system attacks the central nervous system and that includes the brain, the spinal cord, and the nerve to the eye,” said Dr. Williams. “It’s occurring a lot more commonly in Black and Hispanic Latinx communities than we previously thought.”

And, research shows that Black women have a higher incidence than white women.

However, getting the diagnosis or being able to self-advocate has proven challenging for many Black women. Reese shared that before being diagnosed with MS in 2015, she waited six months before seeking medical attention for the tingling in her legs. When she finally made an appointment, her primary care physician dismissed her initial concerns as “stress.” It took her waking up in “excruciating pain” and with facial numbness before being taken seriously.

For Reese, the diagnosis was just the first battle in her “new normal.”

“After I was diagnosed, I noticed there was a lack of representation in the MS space,” she shared. “I was inspired to start my own advocacy organization. We are redefining what sick looks like and ultimately helping Black women have better outcomes.”

Through We Are ILL, Reese is pushing for not only an increased representation, but resources and support. This includes hosting a three-day “Wellness Week(end)” retreat, public speaking, and partnership-building with such companies as Genentech (which sponsored her Sherri appearance.)

“Being on a national platform means the world to me both as a Black woman living with MS and as the creator of an organization who serves them,” Reese told Sadiaa. “I’m proud that when Black women are newly diagnosed, they can find community much sooner than I did 10 years ago.”

Press play below to watch their full interview.