MS and Women of Color
- Victoria Marie Reese is a successful business entrepreneur who was diagnosed with multiple sclerosis at the age of 25.
- The signs and symptoms of MS include numbness, tingling, pain, or weakness in your limbs; muscle weakness and/or spasms; lack of balance, unsteadiness, or clumsiness;, and more.
- In 2017, Reese started a popular hashtag, #WeAreILLmatic, to raise awareness of MS and its effects on women of color.
- In 2020, she helped found an organization We Are ILL to advocate and support women of color who battle the disease.
- According to the National Multiple Sclerosis Society, "more black people have the disease than previously thought.”
A graduate of Howard University, Reese was in California to begin a new job at William Morris Endeavor, a premier talent agency in Hollywood. But then, she began having unusual pain in her legs.
Read MoreView this post on InstagramShe noticed that she began having occasional pain in her legs. The pain and numbness became more persistent. Her legs would even "fall asleep" on her and make climbing steps difficult or even impossible.
One day, she had a dramatic realization that she needed to seek immediate help.
She was walking to her car when her legs simply stopped supporting her. "It was raw," she said in an interview on Medium. "I could see my car and I had to crawl. I crawled in my car. […] I sit there for awhile and I'm like, this is just not right."
Reese sought a diagnosis, but doctors chalked it up to stress.
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Demanding Answers
While Reese was indeed busy working hard to achieve her career goals, she knew stress did not explain her symptoms. Her doctor prescribed antidepressants, but she didn't think that was quite the answer.
The numbness in her legs persisted. In an interview with the National Multiple Sclerosis Society, Reese recalls, "After the numbness spread to my face and I experienced an excruciating migraine, I went back for an MRI of my brain and spine."
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An MRI is a noninvasive scan that produces high-resolution images of a person's organs, tissues, and skeletal system. Reese's test showed the lesions, or sclerosis, that are the telltale signs of multiple sclerosis. She received her diagnosis in 2012.
MS and the Black Community
Medical professionals assumed that MS was not a disease that affected the Black community. Only recently has this false belief been challenged. In fact, according to the National Multiple Sclerosis Society, "more black people have the disease than previously thought. In fact, the rate among Black Americans is consistent with the rate of MS in white Americans."
Furthermore, there is evidence that Black Americans are affected by MS in different ways than the disease manifests in white Americans.
The National Multiple Sclerosis Society explains, "Scientists don't know the reasons for these differences yet. Black people are underrepresented in research, making it harder to find answers."
Reese had a difficult time herself finding answers about MS. Her doctor did not know much about it and referred her to a specialist.
"Being a primary care physician, he didn't have any literature about MS," she recalls. "He handed me a few pieces of paper stapled together to tell me about the rest of my life."
WATCH: Don’t Stop Me Now: The Power of Mindset
Determined to Be Seen and Heard
Reese continued to work and build her career, but with the added burden of facing MS. She learned as much as she could so she could be informed.
"Once you become a professional patient," she told the National Multiple Sclerosis Society, "you start to understand that you should advocate for yourself. You have to be knowledgeable so you and your doctor can work as a team."
This is an approach SurvivorNet experts recommend: learning as much as you can about your disease early on. This can help relieve anxiety and ease fears about the unknown.
There is no known cure for MS, but its symptoms can be managed. Reese's MS is known as elapsing-remitting multiple sclerosis (RRMS): this form of the disease is characterized by flare-ups, or relapses, followed by remissions, or periods in which the person is recovering from the attack.
According to the National Institutes of Health, "Weeks, months, or even years may pass before another attack occurs, followed again by a period of inactivity. Most people with MS are initially diagnosed with this form of the disease."
Creating Community
Reese began to meet other Black women who had MS and was surprised that so many of them had never before met another Black woman with the disease. She knew there was a real need for support in the community.
Reese became an advocate for women of color with MS. Because they were not being seen in the research on MS, and because their doctors were not diagnosing them properly, she started a social media campaign to raise awareness.
#WeAreILLmatic, a viral hashtag, was launched in 2017. By 2020, Reese helped co-found We Are ILLmatic, whose website states, "Black women have long been ignored in the multiple sclerosis community. We Are ILL is changing the narrative of MS and improving the overall health outcomes of Black women."
Reese is proud of the work that We Are ILLmatic does in making Black women feel less isolated in their battle with a scary disease: “Black women can search for us and think, ‘I see myself.'”
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