Why I Do What I Do
If nothing less, COVID-19 and the protests have highlighted systemic inequities faced by Black Americans. Multiple sclerosis research is no different. That is why this issue is so important to me.
I wanted to know everything about MS
When I learned that I had multiple sclerosis the first thing I did was look it up. Sitting in the emergency room I wanted to know everything. What exactly is multiple sclerosis? How does it happen? Is it genetic or environmental? My eyes could not read fast enough. This surprise diagnosis came completely out of the blue and I knew nothing about MS.
I needed research that was relevant for me
One of the most important issues for me was how I would be affected as an African-American woman. 95% of the information I found was focused on people of Northern European descent. Most of the studies focused on Caucasian women. The vast majority of multiple sclerosis patients, I was told, are in that category. If this was true, what did that mean for me? Was there a statistical difference? I searched high and low for as much information I could find. I needed information that was pertinent to me. There was very little, and it hurt.
I knew I wasn't the only black person with MS
I knew that I could not be the only black person with multiple sclerosis. I just wanted to know more about this disease. It was possible that race made no difference in the course of MS. However, there was not any information of statistical importance that could guide me. That’s how I got involved with advocacy focused on recruiting more African-American and Hispanic multiple sclerosis patients into research.
People of color and MS research
Through my work with iConquerMS, I have been able to learn more about the research process. I have learned how researchers develop topics. I’ve learned how difficult it has been to bring a sufficient number of minorities into clinical trials and other forms of research. It was a serious problem that needed answers. I learned that I could be a part of the solution. This is what began my journey.
Using my research skills to help others
It was my own difficulty in finding information for myself that made me want to bring more minorities on board. I have been blessed with educational privilege and access to computers in my early teens. My first computer was the old suitcase kind in 1984 or 1985. There was no internet. By the time the World Wide Web debuted, I was an old hat and very computer proficient. Undergraduate and graduate school gave me research skills.
Information for African-Americans with MS
I am well aware of the fact that although there was very little information on African-Americans and multiple sclerosis. However, I have been blessed enough to locate what there is. I know that there are tens of thousands of my multiple sclerosis brothers and sisters who do not have access to that knowledge. There are so many African-American MS patients who may not have the time and access to do deep, long internet searches.
Why I am an advocate
Not only do I do this advocacy work in order for there to be more information. I do it so that others out there do not have to struggle to find the answers that they need. I do this so that there is information to be found in the first place.
Were you misdiagnosed with something else before receiving a MS diagnosis?