feel like there was anyone that I could talk to about it.”
In doing research about MS, all Hines saw were middle-aged white women, which made Hines who was neither white nor middle-aged feel even more isolated.
“I think that when you’re in a place of such fear but also pain and you’re sick, I think that it can really start to wear on your mental health and I know that I felt myself just kind of retreating from within and really not even being able to articulate [to] even my closest circle what it was that I was going through because I wasn’t even sure myself,” the film producer, entrepreneur and founder and CEO of Merit Haven says.
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Representation matters
Although MS was once believed to be a white disease, recent studies have shown that the rate among Black Americans is consistent with the rate of MS in white Americans, according to the National Multiple Sclerosis Society.
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Unfortunately, Black people are often underrepresented in multiple sclerosis research.
Because of this, Hines realized that she would have to not only be her own advocate, but the Black face and voice of MS that she had hoped to see when she was researching the disease.
“… I really became an active participant in my disease. I really started coming to my doctor’s appointments with notes and with questions and realizing that I [had] to really advocate for the type of care that I deserved. And it’s really unfortunate that the Black community has to be fighting against this in addition to dealing with being chronically ill,” says Hines, who is working in partnership with Genentech’s #MSVisibility campaign to raise awareness on the mental toll this disease has on patients. “I’m really happy and proud and pleased to see that Genentech is taking the time to use their platform to shed light and to uplift Black voices– Black people that are living with multiple sclerosis so that people can see that this is not just a white woman’s disease. There are Black people–Black women that are carrying this as well and I’m just so grateful that I’m starting to see more of that being told.”
To further amplify the Black voices living with MS, the Los Angeles-based filmmaker also launched Marti’s MS Life in 2019.
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“I am a filmmaker and it was really kind of organic and authentic for me to decide to document my journey with MS. As I mentioned earlier, when I was researching the disease and looking things up, I wasn’t seeing a lot of representation. I wasn’t seeing young women [who] looked like me that were living with this and so I was like well I could be one of those voices and just talk about the different effects this disease has on people of color,” Hines shares.
Marti’s MS Life also sheds light on the different reactions people of color have to medications. “…It’s helped others. It has been so cathartic for me to be able to release and talk about and just share what it is that I’m going through. It’s been an outlet for me as well. It’s also just been such a big support for me,” Hines shares.
According to the National Multiple Sclerosis Society, Black people with MS might have more aggressive disease progression and greater disability. This includes:
