Addressing Multiple Sclerosis in Communities of Color

Martin M.S. Alliance Foundation

* 501 c 3 #37-1478450  * @KamilahProctor  * KamilahProctor

The Founder

I was 16 years old and in the 11th grade when I first experienced an “MS episode.” Of course, at the time, I had no idea what an “MS episode” was, but one day I went blind in my left eye while driving to work. I went to my doctor who determined that this incident was a flare up of a condition called idiopathic thromboctepenic purpura (ITP). I had been diagnosed with this rare neurological disorder at age 13, so I knew the drill. He referred me to a specialist who prescribed a round of steroids and I regained my sight. 

I returned to my normal life, which included my regular school activities and participation in local politics. The following year I graduated from high school and enrolled at Howard University. I volunteered on local campaigns and even for Bill Clinton’s re-election campaign in 1996.

Then one night I suffered a muscle spasm so severe that it sent me to the emergency room. A few months later, I experienced a weird numbness along the left side of my face that felt like a shot of Novocain. This time, the explanation for my “episodes” was different—I had multiple sclerosis, a progressive neurological autoimmune disorder of the central nervous system. I was told that by the time I reached 30, I would be so debilitated that I would not be able to walk. I was 18 years old. 

In that instant, my life changed forever. I once had dreams of going to law school and of becoming the first African American woman to serve on the Supreme Court. But everything changed with the knowledge that my quality of life would rapidly deteriorate. I was devastated. 

Eager to escape the reality of my situation, I took an opportunity to study abroad in London for six months. It put an ocean between me and my condition; I forgot all about MS and I had the time of my life. It was a carefree and reckless adventure, but I believed that I only had a short time to enjoy life as a vibrant, healthy young woman. 

I returned stateside and went on to graduate from Howard University with a degree in Political Science. Before long though, I had another MS episode so once again I had to face the reality of life with this disorder. But my time in Europe had given me hope that I could still live a productive life with MS, so I forged ahead with new goals. 
In 1999 I got my first professional job on Capitol Hill working in the office of Congresswoman Sheila Jackson Lee (D-TX). It was during my time on the Hill I was inspired to give meaning to my struggle with MS. I resolved to learn as much as I could and to connect with others who also lived with this disorder. 

I began by attending my first MS support group meeting. However, it was immediately clear that I had nothing in common with the other attendees except for MS. Everyone at this meeting was white and they were older than me. There were several well-known African American celebrities who suffered with MS, but they were also older than me. I was frustrated when I could not find more information about this condition and its manifestations among people of color. I wondered if I was the only young African American woman with MS. So I decided to form my own organization to speak out and to educate our community about multiple sclerosis—the M.S. Alliance Foundation, Inc. 

This organization has two primary goals: public education and financial support services for people of color with MS. The impact of MS among people of color is largely unknown because not enough research has been done, and the public face of this disorder continues to be that of white women. Thus, we must raise the level of awareness within communities of color, and urge more research on the impact of this condition on under-represent populations. Like most progressive illnesses, the economic toll of life with MS is extremely high, so providing some assistance with the costs of medication and treatment is our other purpose. 
When I was first diagnosed with MS, I faced a choice. Either I could wait for an inevitable physical decline and die, or I could live and use this time to fight for my life and countless others like me with this condition. In the ten years since I was first diagnosed, I have chosen to live and I have only begun the fight.