Family wants to raise awareness of sickle cell anemia

Sep. 28, 2022

By Mary Wade Burnside

When Marcel Robinson was a baby, his fingers swelled up and he would cry all night long. His doctor said he had juvenile arthritis. His mother, Roselle, didn’t think that seemed right and asked the health-care provider to dig deeper. He asked if she had the trait for sickle cell disease. She did, but she wasn’t sure about her husband, Maurice, who was playing basketball for West Virginia University at the time.

It turns out that Maurice did have it. Marcel was diagnosed with sickle cell anemia, one of a group of inherited red blood cell disorders. Healthy red blood cells are round and move through vessels to carry oxygen to the entire body, according to the Centers for Disease Control and Prevention (cdc.gov).
But in someone with sickle cell disease, the red blood cells become hard, sticky and C-shaped, resembling a sickle. These cells die early, causing a constant shortage of red blood cells. When they do travel though small blood vessels, they get stuck and clog the blood flow, causing pain and serious health complications such as infection, acute chest syndrome and stroke.

Because both of his parents had the trait, Marcel had a 25% chance of developing the disease. Thankfully, Marcel’s younger brother and sister didn’t inherit it. “That’s why there is such a span in ages, because we were just so worried about another child having the disease,” Roselle said. “And then we had to make sure the other kids were getting enough attention because Marcel was sick a lot.” According to Roselle, “He was in and out of the hospital. The wind blew and he’d catch a cold.”

Her son learned about the disease and took care of himself from an early age. The CDC states that this includes regular doctor checkups, taking care to avoid infections, drinking eight to 10 glasses of water a day and eating right. Individuals with the disease also should avoid getting to hot, too cold and too tired. Still, Marcel experienced some severe health setbacks, including a stroke, needing to have his spleen removed when he was young and also kidney issues. “But he didn’t let it stop him,” Roselle said. “He traveled, and a lot of times, when he and his wife traveled, especially when he was on dialysis, they took everything with them. She learned to do everything for him.”

According to the CDC, it’s estimated that sickle cell disease affects approximately 100,000 Americans and occurs in about 1 out of every 365 Black or African-American births, as well as 1 out of 16,300 Hispanic-American births. About 1 in 13 Black or African-American babies is born with the trait.

Because sickle cell disease doesn’t affect people in the same numbers as cancer, heart disease, diabetes and other illnesses, as well as the fact that such specific groups are the ones who are mostly affected, the condition remains somewhat mysterious to the general population and, according to Roselle, even some health-care providers. “Marcel would go to the emergency room during a sickle cell crisis and he’d be in a lot of pain,” his mother remembered. “They would just think people with sickle cell were just looking for drugs, and we would have to be on them for that. He would go to the ER and they really wouldn’t know what to do.”

That’s why Roselle and her family want to raise awareness about sickle cell disease. “There is not enough research and there is not enough money,” she said. “They used to call it.. maybe they still call it… ‘Black Man’s Disease.’ It’s a terrible disease and so many people don’t know about it.”

Coincidentally, the National Association of Sickle Cell Disease designated September as an awareness month for the disease in September 1976, a couple of months after Marcel was born.

Eventually, Marcel got a bone marrow transplant with marrow donated by his mother, with the hope that it would cure the sickle cell disease. “Then he got an infection and wiped it out,” she said. He was set to try the procedure again, with bone marrow from his father, Maurice. But Marcel died before that could take place, two days after his 40th birthday, in 2016.

Six years later, Roselle enjoys remembering her son, who she noted was happy in spite of the ordeal sickle cell anemia caused. “He always had a big smile on his face.

Mary Wade Burnside is the public information officer for Monongalia County Health Department.