March is MS Awareness Month.
Victoria Reese was 25 when she began feeling numbness and tingling in her legs. She immediately knew something was wrong.
Reese checked in with her primary care provider, who ordered an MRI of her legs. Seeing nothing unusual in the results, he suggested she might be stressed or even depressed because of her busy job as a Hollywood talent agent assistant.
A few weeks later, Reese began having vision loss and migraine attacks that were interfering with her life. The numbness and tingling had moved to the side of her face. She went back to her physician, who this time ordered an MRI on her brain and referred her to a neurologist. The scan revealed nine lesions, indicating the presence of multiple sclerosis (MS).
Watch: How Multiple Sclerosis Affects the Central Nervous System >>
While Reese was able to get the right diagnosis within six months of her first healthcare visit, she believes her race was the reason MS was ruled out at her first appointment. When the MRI on her legs came back clear, she said the provider, a white male, told her Black people didn’t get MS.
“I was told the numbness and tingling I was dealing with was stress and was prescribed antidepressants,” Reese said. “I believe his personal beliefs about Black women and their health directly affected my diagnosis.”
Reese’s experience is unfortunately too common, said Mitzi Joi Williams, M.D., a board-certified neurologist and multiple sclerosis specialist who’s been in practice 20 years.
“In the healthcare industry, MS has traditionally been thought of as a young white woman’s disease, and people may not think of Black people or think of MS at the top of their minds when a Black person comes in presenting with certain symptoms,” Williams said.
A misconception about who gets MS isn’t the only factor delaying care for women of color. MS symptoms can mimic other conditions, leading to a misdiagnosis, and social determinants of health can also limit access to care. With close to 25 treatments available to slow the progression of MS symptoms, any delay in care can worsen a person’s quality of life.
“The goal is to try to catch people as early as possible,” Williams said. “If we treat you at a certain point, our goal is to try to keep you that way. The more disability we accumulate, the less we can help with medicine.”
What is multiple sclerosis?
About 1 million people in the United States are estimated to have MS, an autoimmune disease that affects the central nervous system — which includes the brain, spinal cord and nerves to the eye. Women between 20 and 50 are most likely to be diagnosed, and white women are believed to have the highest risk of developing MS, although newer research has found that more Black women are living with MS than was previously believed.
There are four different types of MS, with relapsing-remitting being the most common. Symptoms vary a lot from person to person, but common symptoms can include blurred vision, vision loss in one eye or color vision impairment. Some people may have symptoms similar to stroke symptoms, such as numbness or weakness on one side of the body, or in an arm or leg. Symptoms will depend on where nervous system damage has occurred and the immune system has been attacked.
Read: FAQs About MS >>
While MS itself is usually not fatal, it can be disabling if not treated and sometimes can lead to complications that can be fatal. Williams said close to 25 treatments, from daily medications to yearly infusions, now exist to help slow the progress of MS from the stage where it’s diagnosed.
“The key component is if your arm or leg goes numb or you lose vision, that’s never normal and you should get it checked out,” Williams said.
There’s no predictable genetic component to MS, Williams said, and while MS can run in families, it’s not necessarily directly passed from parent to child — a great aunt or second cousin might have a diagnosis, for example.
And, while studies exist that show that Black and Hispanic Americans with multiple sclerosis experience higher overall disability and more severe symptoms than white patients, research is limited about the impact of race on the development and progression of MS. As with other conditions, social determinants of health such as access to timely and appropriate diagnoses and consistent treatment could be the reason why women of color face worse outcomes with MS.
Williams said another factor related to misdiagnosis is a general lack of understanding or recognition of MS in the Black community. Someone complaining of excessive thirst and frequent urination might cause them to suspect diabetes, which might be a more familiar diagnosis in communities of color. Numbness in the arm might be attributed to a pinched nerve diagnosis.
Because symptoms can go away and not return for a while, someone with MS might think what they experienced was just a passing issue, and not seek further treatment until it returns. A lack of access to MS specialists or quality general healthcare because of a lack of insurance, location or other socioeconomic factors can further delay treatment.
Then there’s the situation like Reese faced, where a person does seek help but systemic bias leads to a misdiagnosis or a missed diagnosis. Reese never indicated to her healthcare provider (HCP) that she was depressed when she had leg pain and numbness, but was given antidepressants anyway.
“It can take months or years for a woman to get a diagnosis of MS, especially, Black and brown persons who have been historically underserved,” Reese said. “I was diagnosed at a time where I was privileged to have health insurance, working internet, a cell phone and a vehicle to help me as I navigated toward a diagnosis. This is not true for everyone.”
Changing the narrative around MS and people of color
Reese was diagnosed in 2012. From that point, she started her advocacy journey to help other young women of color get the help they need to get a diagnosis and treatment. She noticed that the literature she was given on MS didn’t show many who looked like her, so she launched a social media campaign in 2017, #weareillmatic, to reach out to millennial Black women in similar positions. Three years later, she created her nonprofit, We Are ILL, to help patients become more knowledgeable about MS to advocate for themselves and potentially have better health outcomes.
“A huge part of why I began my advocacy work was that I wanted to be able to sit in the waiting room of a neurologist appointment and look up to see informational pamphlets that had faces like mine on the cover,” Reese said. “I'm proud to say that I am creating those things now for others.”
Williams wants more HCPs to understand anyone can get MS, and wants medical schools to broaden their MS education to understand that it’s not just a disease affecting mostly white women.
For people who have MS symptoms and have been dismissed by HCPs in the past, Williams encourages them to find one willing to keep digging. Williams also encourages more people of color to get involved with research efforts like clinical trials to help the medical community better understand the impact of the disease on communities of color.
“Seek out MS specialist care,” Williams said. “You can connect with places like the MS Society, put in your ZIP code or your city and see who’s closest to you. If you’re not feeling like you’re listened to or heard, find somebody else. You are your own best advocate.”
This educational resource was created with support from Novartis.
