I am Cynthia * Founder of AARMS * Living with MS *

Co-Chair of the National Multiple Sclerosis Society 

Central Jersey Community Council * MSAA Member

I am a middle-aged (maybe a little older) African-American (Black) woman, born and raised in New Jersey. After years of education, years of working, raised a fantastic daughter, blessed with a wonderful son-in-law, enjoying a phenomenal new husband and 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 and why most of the people that  I found information about were only Caucasians? 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 (other than what I found via the National Multiple Sclerosis Society and Multiple Sclerosis Association of America}. 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 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


Hopefully my story will inspire you to fight to get the help you need. Be well and keep fighting, keep pushing!

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AARMS 

AARMS (African-American Resources for MS) believes that raising your awareness of Multiple Sclerosis is vital to fully understanding the disease and how it impacts African-Americans (Black people). That's why we have gathered a plethora of information to help you fight this battle. Click here to learn more.

What Is Multiple Sclerosis 

Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system). In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body.


Eventually, the disease can cause permanent damage or deterioration of the nerves. Signs and symptoms of MS vary widely and depend on the amount of nerve damage and which nerves are affected.


Some people with severe MS may lose the ability to walk independently or at all, while others may experience long periods of remission without any new symptoms. There's no cure for multiple sclerosis. However, treatments can help speed recovery from attacks, modify the course of the disease and manage symptoms.


Resource: Mayo Clinic

The Bigger Picture

Over the years, it has been determined that Multiple Sclerosis was rare among 

African-Americans (Black people). Hence, not getting appropriate and timely treatment, misdiagnosis, etc. It is now a known fact that African-Americans do get Multiple Sclerosis, but more severely, compared to other groups.

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Disclaimer

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Credit for Photos: Pixabay

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