African-Americans with Multiple Sclerosis

Hello MS Community,

I am a middle-aged (maybe a little older) African-American (Black) woman, born and raised in New Jersey. After years of education, work, raising a wonderful daughter, enjoying a fantastic new husband, a great family and friends, I began preparing to "live the good life" and enjoy the fruits of my labor. Not to mention that, my first grandchild was on the way and I was ecstatic!

When low and behold, I began to notice (a few years ago) that physical issues I experienced throughout the past 15 years, resurfaced. But this time it was with a vengeance. After going from doctor to doctor, emergency rooms, Urgent Care facilities, having a series of MRIs done and so forth and so on, I was given  devastating news. I will never forget the words;  "You have more lesions on your brain than we can count, they're active, many are old and that means that, you have Multiple Sclerosis." This was close to two years ago. Needless to say, I almost hit the floor, but I'm so used to holding it together that I quickly composed myself. My first question was "why did it take such a long time to diagnose me with this disease?" The answer was "it is not typical for African-Americans to get this disease." It crushed my plans and left me feeling hopeless.

Not knowing how my family would take it, I felt I better get it together quickly and research what this disease is all about and how I could help myself. I began to list questions to ask my doctor, research how I could have possibly gotten this disease, what the medication subscribed was, how I could get help to understand the disease? Where are people that look like me with this disease, is what I thought?

 Despite researching Multiple Sclerosis for more than a year, I found very little information that pertained to African-Americans (Black people) who are living with MS. That’s when I decided that I had gone through enough with this disease. Well, it took me close to a year to gather information. Even when I attended support groups, physical therapy, infusion appointments, volunteered, etc., I could count on one hand the number of African-Americans (Black people) that I encountered with MS. Not because we don't get it, but because no one talks about it and we are too often, not included in conversations about MS, studies and/or clinical trials. Nor are we abreast of many educational tools to help us navigate through this disease.

 Based on my experience, I know that sometimes people with MS (regardless of race) do not have enough energy to get out of bed and also I know that we definitely do not have enough energy to research information about MS. That's why I decided to "take one for the team" and develop a place to find most of the resources that will help us. I created a program called AARMS (African American Resources for Multiple Sclerosis). The web address is wegetmstoo.org. Please feel free to share it. 

Hopefully my story will inspire you to fight to get the help you need if you or someone you know has MS, no matter who they are. Be well and keep fighting, keep pushing!