Being Black
Diversity, Inclusion with Rare Diseases
By Salimah Vickers
When diagnosed with a rare disease, the patient who gets diagnosed has their own set of challenges. People of Color face additional problems that can end up being fatal. Accessibility to quality healthcare and good insurance play a significant role in the treatment a person of color receives. Did you know that people of color comprise only 16% of research studies? There’s so little information on rare diseases affecting People of Color, because they aren’t in clinical trials.
Neuromyelitis Optical Spectrum Disorder or NMOSD, is a rare autoimmune disorder. The immune system attacks a water channel protein called aquaporin-4. Which is essential to the central nervous systems. In short form, it attacks the protective lining of the brain and spinal cord is damaged and broken down. There was a time when doctors thought Neuromyelitis Optical Spectrum Disorder or NMOSD, was a simple form of Multiple Sclerosis MS. This has since be proven not to be the case.
Neuromyelitis Optical Spectrum Disorder or NMOSD has been on the researcher radar for about 100 years. A complete century and this is the first time I’ve ever heard of the disorder while doing some research for writing this article. During a study it was found that black people were 2-3 time more likely to be diagnosed with the illness than any other ethnicity. Research also showed the Neuromyelitis Optical Spectrum Disorder or NMOSD was found to affect women more than men.
I often wonder how many black patients have this disorder and have been misdiagnosed or not even diagnosed at all, because of the lack of research or let’s say it, sick while being black. The more I think about this the more it terrifies me for my children and grandchildren. I don’t want them looked over because of their ethnicity.
My sister has Multiple Sclerosis MS. Before she was diagnosed with MS, the doctors told her it was her back and she needed surgery. Not long after her back surgery she was diagnosed with Multiple Sclerosis MS. Was the surgery really necessary? Probably not and we wont ever know. What do they see when they look at us? I often wonder. I feel we have to work and advocate a bit harder, and sometimes longer so that we are taken seriously. I can only hope and pray that will change someday for the better. Until then, ask question that you don’t understand. And always advocate for yourself.
