Author seeks attention for sickle cell disease

“But they that wait upon the Lord shall renew their strength: they shall mount up with wings as eagles: they shall run and not be weary: and they shall walk and not faint.”

That is the Bible verse that closes the 40th chapter of Isaiah. It is also the verse Tallahassee resident Juanita Thomas used in the opening of another chapter in her life, the writing and publishing of her book, “Marcia: A Celebration of Life.”

An idea of her late daughter, Marcia, Thomas first published the book in 1991 as a testament and guide to help families cope with sickle cell disease.

Thomas, who lost two children to sickle cell disease, was among those who gathered Saturday morning to shed light on the severity of sickle cell disease.

Approximately 650 people arrived at the Jake Gaither Recreation Center to donate money and lend support to the Leon County Sickle Cell Foundation for its 25th annual 5K Run-Walk.

The event was one of many functions the organization is hosting this month, which is National Sickle Cell Awareness Month.

People who are curious of their sickle cell status may contact the LCSCF for a free screening.

According to the Sickle Cell Information Center,, sickle cell disease is when red blood cells are shaped like sickles instead of doughnuts like they are supposed to be.

The sickle shaped cells are harder and stickier than normal blood cells, causing clogs when traveling though smaller blood tubes.

Approximately one in 500 blacks has the disease, and one in 12 blacks carry the sickle cell trait.

Possessing the trait is far different from having the disease.

People who possess the trait live normal and healthy lives, whereas people who have the disease are liable to have painful episodes, strokes, leg ulcers and an increase in the possibility of infection.

“It is a misconception that sickle cell is a black person’s disease,” said Phillip Randall of Tallahassee. “It’s just like that in America.”

Randall, who lives with sickle cell disease, believes if politicians referred to sickle cell like they do for other afflictions, it would “influence other donations and will help with awareness.”

Because there is not a cure for sickle cell disease, medical costs eventually add up.

Randall, who estimated people with the disease visit the hospital at least a few times a year, has two insurance policies.

But hospitals still require him to come out of pocket for some of his expenses.

One lawmaker who is astutely aware of the effects of sickle cell disease is Florida Rep. Curtis Richardson, D-Tallahassee. Richardson, who has served on the Board of Directors for the LCSCF, possesses the sickle cell trait.

Richardson said he was unaware he possessed the trait until he and his wife were preparing to have children.

“Fortunately, we’ve had two healthy children,” Richardson said. “We haven’t had them tested for the trait yet, but they do not have the disease.”

The only way to get sickle cell disease is to be born with it. If one parent possesses the trait, the offspring has a 25 percent possibility of having the disease.

“We’ve got a lot of work to do in terms of research,” Richardson said. “In the meantime, make sure people with the disease get the medical care they need.”

Currently, the state provides $1.2 million through the Department of Health for sickle cell research. Richardson said he and others in the legislature are attempting to raise that figure to $3 million.

But money will not bring back Marcia, who died Sept. 6, 1986. What it will do, Thomas said, is bring awareness and research to the disease.

A portion of the proceeds of her book goes toward the National Association for Sickle Cell Disease.

“It’s up to me and others to carry on the research and awareness about the disease,” Thomas said.

“So many people are not aware of the symptoms. They are so similar to a lot of other ailments. Unless they are tested they will never know,” Thomas said.