Sickle cell patients are focus of special blood drive

Imagine glass shards being smashed relentlessly into your bones over and over again.

That is what the pain of sickle cell disease feels like, a young girl once told Velvet Brown-Watts, who three years ago started a local support group for sickle cell patients and their families.

“I thought that was very poignant,” she said of the girl’s description.

Brown-Watts’ son, Jeremiah, was diagnosed with the disease at 2 months of age. He is now 4 years old and experiences frequent pain. He has been hospitalized with pneumonia and other conditions because the disease affects a person’s immune system. He was taken to the emergency room 12 times in his first year, she said.

“He’s on heavy narcotics because of the pain,” Brown-Watts said.

Early on, she had to quit her social work career because her son’s physician urged her not to expose him to the germs of a day care center.

“I was going to become as educated and as empowered about this disease as I could,” Brown-Watts said.

Sickle cell disease is an inherited blood disorder in which red blood cells have an abnormal type of hemoglobin. The red cells, which carry oxygen throughout the body, often become crescent-shaped and have difficulty moving through small blood vessels. People with the disease have frequent pain crises and are susceptible to strokes and organ damage.

“Some people say those with sickle cell are just wanting drugs. But this disease is real. People die from it,” Brown-Watts said.

An estimated 1,300 Oklahomans and 100,000 Americans have a form of the disease.

“We don’t believe it’s that low. We have a huge population of Native Americans and Hispanic Americans who also could have the disease,” Brown-Watts said.

Sickle cell isn’t a disease about race, but about the region an individual’s forefathers came from, she said.

“That is what is disturbing to me, is that this disease has been so marginalized as just a black disease,” Brown-Watts said.

The leading theory is that sickle cell disease began as cells mutated to resist malaria. So those with genetic roots in parts of the world where malaria is endemic are more likely to inherit the sickle cell trait, said Drew England, a certified medical technologist at Tulsa’s OBI immunohematology reference lab.

Although people of many races may inherit the disease, Oklahoma’s sickle cell population is mostly African-American, he said.

Many patients are treated with frequent blood transfusions to alleviate the effects of the disease.

That’s why Brown-Watts turned to Oklahoma Blood Institute to organize a blood drive for people with sickle cell disease.

It is critical to get more black Oklahomans to donate because their blood is more likely to match sickle cell patients’ blood, England said.

“Certain phenotypes run in certain ethnic populations,” he said. “If we screened 100 Caucasians for a certain phenotype, we wouldn’t find one. If we screened 100 African-Americans, we’d find four or five.”

If a patient gets blood that doesn’t match as closely as possible, he or she will likely develop antibodies against it, England said.

“That can cause future transfusion complications,” he said.

Copyright © 2009, World Publishing Co. All rights reserved.