When Camille Lampkin was first diagnosed with multiple sclerosis in the early 2000s, she was prescribed a medication she had to inject into herself on a regular basis.
The medication was meant to treat the symptoms of the autoimmune disease, which does not have a cure and degrades the central nervous system over time. Multiple sclerosis symptoms can range from numbness of arms and legs to paralysis and vision loss.
At the time, with a new diagnosis, Lampkin was scared of the injections into her thigh or arm. Looking back, she wished she’d known others like her using the same drug and having a similar experience.
“Man, that would have been cool to have a resource to go to about … other Black women going through this,” Lampkin said. “Like, you’re telling me I’ve got to stick a needle in my thigh? It was crazy.”
Now, Lampkin is part of a group building that network: She’s a volunteer Cleveland community leader for We Are Ill, a national patient advocacy group founded by and for Black women living with multiple sclerosis. This Saturday, We Are Ill is hosting its first community meet-up in Cleveland for Black women and their caregivers – whether that be family, friends or romantic partners.
The community meet-up is free and casual, said Ashley Ratcliff Lundy, director of communications for We Are Ill – a chance to share diagnosis stories, treatment ideas and even talk about hobbies.
“It’s a very low-key but beautiful event because we often hear that this is the first time that they’ve ever been to an event for MS, and they’re pleasantly surprised,” Ratcliff Lundy said. “Because we are still living our lives. We dance. We, like, laugh. It takes their perception of what an MS event will be, and it turns it on its head, because we are very joyful.”
Lampkin said this will be the first time since her diagnosis two decades ago that she will attend an in-person event focused on Black women who have multiple sclerosis.
“This is fun and exciting to give us spaces to share our experiences,” Lampkin said.
The community meet-up will take place at ThirdSpace Reading Room at 1464 E. 105th St. on Saturday, June 21, from 3 to 5 p.m. RSVP here.
Black women and multiple sclerosis
We Are Ill was founded in 2020 by Victoria Reese Brathwaite, who was frustrated by the lack of representation in the communities focused on multiple sclerosis.
“Traditionally, for a while, MS was considered a disease that middle-aged or older white women got,” Ratcliff Lundy said. “It was a thing – that Black people don’t get at MS.”
That mindset shifted in academia after a 2013 study found Black Americans had an up to 47% higher risk of developing multiple sclerosis than white Americans. Black women had a higher incidence of multiple sclerosis than white patients of both genders, the study found.
While white women as a group still have high rates of multiple sclerosis, the study opened the door to more research into the growing number of Black Americans with the disease. Now, some studies show that Black Americans with multiple sclerosis tend to have more severe clinical disabilities.
We Are Ill advocates for more diversity in clinic trials.
Fostering community within the world of multiple sclerosis
After Lampkin was diagnosed with multiple sclerosis, she sought out others who had the disease too. She could often find programming sponsored by drug companies. But spaces explicitly for Black women living with the disease were fewer and farther between.
Lampkin wanted that space because she says Black women have a “different journey” when it comes to chronic illnesses.
“A lot of times you would hear women of color say they had went to the doctor, and the doctor says, ‘It’s nothing,’” Lampkin said. “Or, ‘You’ll feel better later.’ Or, ‘It’s something else.’ And so they really push to find an answer about what’s wrong with them.”
A few years ago, Lampkin found We Are Ill online. The organization has a private Facebook group for members of the We Are Ill community. Lampkin came to use it for the words of encouragement and resources.
Now, We Are Ill is hosting on-the-ground community meet-ups for the first time. Lampkin said there are countless stories to be told and advice to be shared.
“Maybe you’ve just been diagnosed with MS, right? And maybe no one else in your family has it,” Lampkin said. “ … It doesn’t matter the age, but you don’t know where to go to. Like, where do I start? There’s so many emotions you’re going through.”
Women can recommend doctors or therapists to each other. They can share tips and tricks for how to live with the disease on a daily basis, like where to get a walker at the supermarket if it’s needed.
Lampkin and Ratcliff Lundy hope the meet-up is a first step to growing an on-the-ground network for Black women living with multiple sclerosis in Cleveland.
“We’re starting boots-on-the-ground to organize women here to be a support to one another via We Are Ill,” Lampkin said.
