Living with multiple sclerosis (MS) presents a unique set of challenges, from the physical symptoms to the emotional toll it takes on individuals and their families. For every 100,000 people in the general population, 298.4 of them are Black and living with more aggressive disease progression and greater disability.
For many, the journey begins with a diagnosis that can be both bewildering and isolating.
Los Angeles and Gold Coast, Australia-based poet and advocate Azure was living with MS for nearly a decade before receiving a diagnosis.
“It took a few years to receive a full diagnosis, and initially, it was harrowing due to the lack of information. The available information felt vague yet final and fatal, which was a major struggle,” Azure shares, adding that for many years she lacked the courage to talk about her diagnosis with friends and family.
“If I could do it over again, I would have sought more encouraging spaces. I wanted a community to help me cope, breathe, and educate myself, but I couldn’t find one.”
One of the biggest challenges Azure faced was the lack of access to healthcare and resources.
“The lack of access and agency is still very prominent today. When I first got diagnosed, I did not know the disparity between symptoms or how the disease manifests itself in Black patients. That was a new revelation just a few years ago, which has been a mind-blowing experience. Your basic MRI was $750, and I didn’t have any healthcare,” she shares.
For many patients, this lack of access often means delayed diagnosis and missed opportunities for early intervention, which is crucial in managing MS. It is even more crucial for Black patients who face more aggressive disease progression and greater disability, including:
- Walking, balance, and coordination problems
- Cognitive and visual symptoms
- Frequent relapses with poorer recovery
- Earlier disability onset
“I didn’t find out about the disparity in multiple sclerosis until Dr. [Mitzi Joi] Williams became my doctor. We were joined together on another initiative, and I found out myself less than five years ago. That’s a problem, a massive oversight.”
The initiative Azure is referring to is the #MSVisibility: Breaking Barriers campaign by Genentech, which sheds light on
