COLUMBIA — Briskly walking up to her home near downtown Columbia, hands filled with plates from her local church’s weekly food giveaway, Dalita Bullock’s multiple sclerosis seems invisible. The vibrant mix of bright fragrant-looking flowers stitched into her dress glimmer in the pieces of sun shining on the ramp she uses in place of the front steps leading up to her home.
She is taller than average, at 5 feet 6 inches, and more slender than most.
Apart from multiple sclerosis, a disease that impacts parts of the central nervous system that controls nearly everything in the body, Bullock is otherwise healthy.
“MS is enough to deal with,” Bullock said, attributing her health to a somewhat restrictive diet and adequate exercise to stave off other comorbidities.
Physical activity and exercise play a vital role in managing MS symptoms and improving overall well-being. Engaging in regular physical activity can enhance mobility, reduce fatigue, and enhance the quality of life, Victoria Flores, a behavioral coach for the Targeted Exercise for African Americans with Multiple Sclerosis (TEAAMS) study told The Post and Courier.
The study, Project TEAAMS, is a joint effort between the University of Chicago’s College of Applied Health Sciences Department of Kinesiology and Nutrition and The University of Alabama at Birmingham’s School of Public Health.
It’s one of the only exercise studies in the United States centering on Black patients with MS, Flores said, nodding to the significantly low number of exercise studies tailored toward African Americans with the disease, even though other studies show physical activity increase quality of life in MS patients.
In fact, there’s a sizeable research gap for African Americans in clinical trials and research studies for MS in general.
The disease, once considered to plague mostly White men and later mostly White women, has increasingly affected more African Americans each year in the U.S., according to recent studies. Most are Black women.
Yet, less than 1 percent of the more than 60,000 research papers on the disease center on Black patients.
Fewer than 2 percent of participants in exercise research studies for multiple sclerosis are Black, despite the fact that Black people have a more aggressive progression of the disease and lower activity levels.
So far, Bullock is one of the only participants from South Carolina, which has approximately 4,000 residents living with MS. In the U.S. the disease affects nearly 1 million people.
Understanding Multiple Sclerosis
Bullock was diagnosed at age 21, just three months before graduating from Benedict College in Columbia in 1988. She’s rare.
“I’ve never met anyone that’s been knowingly living with MS who is a Black woman for as long as I have,” Bullock said.
At the time, MS was thought to only affect White people, mainly White men, and there were no readily available treatments for the disease.
And while the earliest recorded description of MS dates back to the Renaissance times of the 14th century, a successful treatment wasn’t found until 1993.
The images Bullock depicts of her life before treatments were available paint a fragile picture, but definitely not lacking color. She recalled learning of her disorder as a senior undergraduate student at Benedict College, one of South Carolina’s popular Historically Black Colleges and Universities.
It was homecoming weekend, a time wrought with long-standing traditions of overindulgence and school spirit, especially for the senior students.
“I admit, I partied a little bit too much,” Bullock said.
Bullock said that night, after partying with her friends Lisa, Jackie and Tammy, she decided to rest for the night at one of her friend’s house.
When she woke up a few hours later on the sofa, she couldn’t move.
She was having another exacerbation, also known as a relapse, flare-up or attack the occurs at the onset of new symptoms or the worsening of old. They typically last over 24 hours.
Refusing to allow her friends to take her to the hospital or to call her family, Bullock stayed on her friends couch for over a week until the exacerbation ended.
They helped her use the bathroom, and sat her up on the sofa when it was time to eat.
“I would pray about it and just cry,” Bullock said. “But my friends would always say, ‘you’re going to be OK.’ They took very good care of me.”
Other symptoms Bullock has endured include blurry vision, prolonged double vision, fatigue and numbness or weakness in one or more limbs on one side of the body.
To date, she said she still has no feeling in the entire left side of her body.
Sedentary Behavior
But that doesn’t stop her staying active. For many Black people with the disease, it does.
Its especially important for people with MS because sedentary behavior, or any activity performed in a seated or lying position like watching television or sitting at a desk working, can cause the disease to progress faster and increase levels of physical disability.
Koi Johns, a long-time MS survivor who runs an online and in-person support group for people with MS in the Columbia area has seen it first hand.
Johns was diagnosed with the disease in 1992 and has since gone through numerous relapses and tried a variety of different medical treatments as they came available.
Before retiring in 2013 due to complications with the disease, she was a surgical scrub nurse for 20 years, but the need to stand for hours at a time and remember long lists of medical procedures became increasingly challenging.
“I did it for as long as I could,” Johns told The Post and Courier. “I wish I was able to keep working. I loved my job.”
Johns said for many of the Black MS patients in her group, the disease has progressed farther than it has for White members of the group. And many spend most of their sitting down.
“I’d attribute that to their disability level,” Johns said. “They’re in wheelchairs and walkers.”
Sedentary behavior presents its own set of challenges and associated risk factors like a higher risks of heart disease.
For more information about multiple sclerosis, its symptoms, and available resources, visit the Multiple Sclerosis Association of America (MSAA) at www.mymsaa.org/ or the Greater Carolinas chapter of the National Multiple Sclerosis Society at www.nationalmssociety.org/chapters/nct.