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Diversity and MS

By Matt Cavallo
When most people think about diversity, they think about race and gender. This is also often true when people think about multiple sclerosis. The first time that people usually learn about MS and its relationship to race and gender is when they get diagnosed.

When I was diagnosed with MS back in 2005, I was told that it was a disease that effect mostly Caucasian women aged 20 to 50. In fact, when I was reviewing medication options, my doctor told me that one of the medications worked best for women with brain lesions. As a male with lesions on my brain and spine, I started to feel like an outlier in the MS community. However, recent studies show that MS affects a much more diverse population.

A retrospective cohort study found that in 496 patients newly diagnosed with MS, the incidence rate per 100,000 person-years was higher in African Americans (10.2) than in Caucasian Americans (6.9), Hispanic Americans (2.9), or Asian Americans (1.4). The same study found the African Americans had a 47 percent increased risk of being diagnosed. The gender ratio for multiple sclerosis is still two to three times more prevalent in women than men. 

Still, there is more to diversity than gender and race. To better understand diversity, let’s first look at the definition. Merriam Webster defines diversity as the condition of having or being composed of differing elements, especially the inclusion of different types of people (such as people of different races or cultures) in a group or organization. When thinking about diversity most tend to associate labels such as race, gender, ethnicity, age, sexual orientation, age, disability, religious and political beliefs. 

Diversity is not just who people are, or what people say or do; it's how they think. Diversity may at times be divisive because it is based on an individual's perspective. The challenge is that people's lives consist of differing experiences and cultural norms. Individuals who don't fit into what others perceive as "normal" may feel like they are aren't respected because they don't "fit in." People tend to be most comfortable with others like them or those who are of like minds. This means that online or in support groups, we tend to find others living with MS so we don’t feel alone.

This is a great thing. Some of my most fond memories living with the disease are in meeting other people like me. However, one of the problems with MS is that there are no clearly defined normal. MS effects everyone differently. 

Two people living with MS with similar race and gender backgrounds could experience the disease in completely different ways. Since we all experience the disease differently, it is important to understand when you talk to other people living with the condition that what works for them, might not work for you.

When we start to understand we are all unique then our relationship with our neurologist becomes more important. Your neurologist is going to combine all of the diverse factors that make your MS uniquely you and come up with a plan of care that will give you the opportunity to have the best possible outcomes. It is also important to know that if something isn’t working, you should advocate for yourself and speak up. Because everyone with MS is unique, don’t be swayed by others. While we are a part of a diverse community of people living with MS, your journey is uniquely your own.