Letrai White has been treated at CHKD for sickle cell disease most of his life. The 18-year-old Salem High School senior was diagnosed with the disease at birth. He’s made hundreds of visits to CHKD’s sickle cell program, and he and his Virginia Beach family came to know the hospital and staff fondly as “a second home and family.”
Letrai has seen tremendous progress in the treatment of sickle cell disease over those years. He has benefited from and now participates in a growing number of clinical research programs increasingly aimed at helping find better treatments, and ultimately cures, for the chronic, life-long and life-threatening illness.
“They’ve made lots of progress in treating the disease,” Letrai said, “and all the resources to help patients are in place at CHKD.”
He cites the treatment for iron overload that plagues patients who have suffered a sickle-cell stroke and therefore must undergo monthly blood transfusions.
Letrai suffered a stroke on Christmas Eve in 1996, two days short of his seventh birthday. A month in the hospital followed by weeks of outpatient therapy returned him to good health. He has had no recurrence.
What followed was years of monthly blood transfusions.
“The good news,” said Dr. William Owen, Letrai’s physician and director of the CHKD sickle cell program, “is that blood transfusions work well in helping prevent subsequent strokes and reducing the anemia caused by the disease. The bad news is the new blood brings extra iron into the body – iron that the body cannot get rid of by itself. And that can be dangerous.”
Iron overload results after as few as 10 transfusions, and it can damage the heart, liver, spleen and other organs, Dr. Owen explained.
Fortunately, a medicine can be administered to help eliminate the iron from the body through a process called iron chelation. But until recently, that medicine, deferoxamine, could only be administered by inserting a needle under the skin of the abdomen every night and infusing the drug with a tiny pump while the child sleeps.
“While the medicine and the procedure were effective,” Dr. Owen said, “it wasn’t something kids, especially teens, found to their liking. Compliance was a challenge.”
Letrai and his parents, Larry and Thressa, remember what the challenge was like. “It was painful for him, and it was always a struggle to get him to do it,” Letrai’s father said.
So when the drug manufacturer developed a similar medication that could be taken orally each day rather than by needle or pump, Dr. Owen and his team were happy to become a part of clinical trials that began in 2004.
Letrai significantly benefited from the outcome of the trials, which resulted in FDA approval of the new medicine. And he has been on the oral medicine since 2006.
“I drink it once a day with juice, and it’s made a big difference in my life,” he said.
Letrai is now helping with a clinical trial to see if sickle cell patients can benefit from a medication to reduce stroke rather than the frequent blood transfusions. If successful, the problem of iron overload from transfusions may be a thing of the past. He is hopeful his participation will reduce the incidence of stroke for others. Tragically, his sister, Imani Divine White, died in 2004 at age 5 from complications of a sickle cell related stroke.
“CHKD has always been there for us, during the good times and the not-so-good times,” Letrai’s father said. “They’ve been wonderful, always available day or night.”
Letrai believes there will be a universal cure for sickle cell one day – sooner rather than later. And he’s determined to be a part of the research that helps discover it.
Dr. Owen adds: “We have a great opportunity to be involved at the national level with sickle cell related research programs because of the commitment CHKD has made to the effort and the resource of families like Letrai’s. It allows us to be on the cutting edge of sickle cell medicine.”
Dr. Owen practices with Children’s Specialty Group PLLC at CHKD.
This story was featured in the fourth quarter 2008 issue of KidStuff, a publication of Children's Hospital of The King's Daughters.