African Americans With Multiple Sclerosis
This is an editorial of sorts based on information involving African Americans and MS.Although MS affects fewer African Americans than Caucasians, studies seem to suggest a disease progression based on race, that does not give the most positive predictions.
As a black American, I am of course interested in such information, but I must confess it bothers me to even think about this subject, I guess because I’m not thrilled with the research results.
I’m not a statistic and while I don’t necessarily accept the research as absolute truth, I would be less than truthful to suggest the data does not concern me in the least.
Still, I hope my views on this subject will help African Americans with MS to think outside the box when it comes to news reports on studies connecting disease progression with race.
- MS progresses more rapidly in blacks - UPI.com
Fewer African-Americans develop multiple sclerosis than whites but their disease progresses more rapidly, University at Buffalo researchers found.
Examples of Research Result
Looking to the right of this page will reveal the latest news coverage given to a study out of Buffalo, NY. This is the type of information that is uncovered if you do a search on Multiple Sclerosis based on race.
The most noteworthy aspects of the information presented is quoted below:
"The study's MRI scans were conducted at the Buffalo Neuroimaging Analysis Center (BNAC), part of the Jacobs Neurological Institute/UB Department of Neurology. Robert Zivadinov, MD, PhD, a UB associate professor of neurology, is director of the center.
Seventy-nine black patients and 488 white patients were entered in the study.
Participants were older than 18 and had been scanned within 90 days of their most recent clinical visit. Black participants were significantly younger, and their disease was more severe than white patients, despite having MS for a shorter amount of time.
"Results of the MRI scans showed that the aggressive disease process in blacks appears to be associated with increased macroscopic and microscopic tissue damage, as measured by specific MRI parameters," says Weinstock-Guttman.
"Based on our MRI findings, a plausible hypothesis that would explain the more aggressive disease in blacks compared to whites with MS may be that blacks have a reduced capacity for remyelination, the brain's ability to repair the protective myelin sheath. However, to confirm this hypothesis, we will need to conduct more longitudinal studies." "
For a minute, imagine you are black and you have just found out you have MS. You do what comes natural in such a situation, you research to find out more about your health condition. (In fact, that's no doubt why you are reading this article right now, you're black and you have MS.)
How does it feel to run across information that gives the impression your MS experience will be worse than other people with MS, solely due to race?
Do not tag words like more severe symptoms, decline faster, increased disability, and progresses more rapidly not appear terrifying?
What are you supposed to do with this knowledge?
Eye-catching headlines aside, this conclusion is based on a study that compared 79 black patients with 488 white patients.
In my opinion that is a very small study, especially if I am one of the 79 black patients.
Fact or Hypothesis?
Did you happen to notice the last sentence of the study quoted above? It says to confirm the hypothesis more longitudinal studies need to be conducted.
Why don't the news agencies lead off with that part of the report?
If in skimming this information the lead off paragraph shocks you, how likely is it that the last sentence will even register in your mind?
In contrast to those attention grabbing headlines, is the link to the right, which contains the same information but has titled its article in a less alarming way.
Reading this article would not be as likely to elicit a panicky response in African Americans with MS.
Wouldn't it be more accurate to simply change around the order of the information presented so that the most important info to a black person with MS would be that this "study" is a work in progress based on a small sampling and needs to be verified further?
My First and Only All-Black MS Conference
What Personal Experience Tells me
It was a historic day for me. The Delaware Valley MS Society arranged for a MS conference specifically for African Americans with MS. I had never witnessed such a large gathering of MS patients who were also black.
I do remember seeing many with various types of walking aides, but I don’t remember thinking there was an unusually high number of wheelchairs, cane, and walkers compared to the mixed- raced conferences I attended before and since that unique gathering.
Do you know the first time I discovered blacks supposedly have more disease progression wasn’t from my neurologists but from the oline support forum I visited regularly?
I was shocked! What do you mean I have a higher risk of disease progression? I wondered as I read.
I find it a touchy subject for me. I resent the implications based on race alone, it seems unscientific to me. Maybe the numbers only appear this way because blacks are not being diagnosed in high enough numbers because of inadequate insurance coverage.
Perhaps if everyone who was African American was examined and properly diagnosed, the numbers that suggest a more quicker disease progression would average out.
Surely incorporating social-economic issues would be just as revealing as isolating disease progression based on just race alone.
Not Statistically Doomed
Be that as it may, if you are black and have received a conclusive MS diagnosis, my advice to you is to remember you are not a statistic.
For every black person you know that has walking difficulties due to MS, there is a black person with MS who doesn’t have such issues.
It has taken me at least 14 of my 16 years of living with MS to develop what I deem significant walking difficulties, and so don’t consider myself within the normal range of this study. I would love to know just how many black Americans can be categorized in such a way.
So keep positive, keep hopeful, and keep open-minded. Don’t assume anything about your future until your future becomes your present. Reality in the here and now holds much more weight than does suppositional built on an unproven hypothesis.
MS is hard enough to live with in and of itself, don’t make your burden heavier by believing the worse is going to occur.
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