Sickle cell anemia is a serious, inherited blood disease that affects more than 70,000 African Americans. Approximately one in every 400 African American newborns has sickle cell disease. People with the disease inherit a sickle cell gene from each parent. Normally round red blood cells have a quarter-moon-shape in children and adults with sickle cell, which compromises the ability of those red blood cells to carry oxygen throughout the body.
Unlike sickle cell anemia, people who have the sickle cell trait inherit a sickle cell gene from one parent and a normal blood cell gene from the other parent. However, people with either the sickle cell trait or sickle cell can both pass the gene to their children.
Persons with sickle cell anemia commonly experience fatigue and other symptoms of anemia.
Sickle cell anemia patients suffer from multiple pain episodes, which can be acute or chronic, which can last hours, days or in the case of chronic pain—for months. Sudden pain throughout the body is called a sickle cell crisis and the crises often affect the bones, lungs, abdomen and joints. Painful sickle cell crises occur when red blood cells clump in the bloodstream. Complications such as strokes, and major organ damage can occur due to stiff, sticky, abnormal red blood cells that don’t move well through the bloodstream.
Currently, multiple medications and blood transfusions are used to treat sickle cell anemia. The only known cure in a small number of cases is a bone marrow transplant.
Many youth understand and accept limitations sickle cell anemia may place on their friends. However, some children with sickle cell anemia are forced to deal with the rude stigma of “having a disease” along with other peer pressures of youth and adolescence.
There is one week out during the summer that Saint Louis Children’s Hospital and Washington University School of Medicine provide children with sickle cell anemia a safe getaway to be regular old kids n at Camp Crescent held each year in Babler State Park near St. Louis.
“Now that I know I’m not the only one that has sickle cell, I can talk to other people about it,” said Georgia Ray, a seventh grader at Southeast Middle School.
Activities that most kids enjoy without a second thought, like swimming in cold water on a hot dayn can set off a terrifying and painful crisis for children with sickle cell anemia.
“If you stay in there too long, you can get really sick. Water just feels like an ice pick, just stabbing you,” said Sherraine Griffin, a former sickle cell camper turned camp counselor. She recently graduated as valedictorian at McClure North High School and now attends Washington University.
Medical staff from Children’s Hospital and specially-trained camp counselors stay with the children around the clock as they enjoy outdoor fun. In order to reduce the possibility of a crisis, Camp Crescent has a routine developed for sickle cell campers before they get in the pool. The kids take a warm shower before the swim, spend approximately 30 minutes in the pool in the mid afternoon sun, then they return to warm a warm shower.
“Cold water/ice slows down blood flow and warmth speeds it up. The hope is to reduce or eliminate the amount of pain the patient experiences as a result of swimming,” said Kim Lesley Ferguson MSW LCSW of St. Louis Children’s Hospital “Quite a few of the patients do get chilled, have subsequent pain and need mediation after swimming.”
Renowned sickle cell expert Michael DeBaun M.D. also stays at Camp Crescent (unless he is called off for an emergency) to ensure the best medical care for the children, who range in age from 9 to 13. Older teens with sickle cell disease are trained as camp counselors for the camp.
Many of the children and teens at the camp expressed interest in science, math and becoming a doctor, and all pointed to DeBaun as their inspiration.
“I’m their fan—that’s why I am here. They rejuvenate me. They rekindle my spirit in what I do,” DeBaun said. “You want to see some joy? Go see them at the pool n pure bliss.”
Dajon, a fifth grader at Gateway Elementary rushed to Dr. Debaun’s side after going fishing for the very first time. Counselors scurried him away, as it was time for arts and crafts. After a few moments of sadness, Dajon got his chance to share his “big fish that got away story” with his sickle cell hero.
“He opened up his mouth and then he dropped it,” Dajon said. “He had whiskers and looked like a catfish from Schnucks. He was about three feet tall!”
After the big fish story, Dajon got that smiling look of approval from Dr. DeBaun, he was ready to join the other kids with arts and crafts.
Camp Crescent is provided at no cost to the families of the campers.
DeBaun is also responsible for the creation of Charles Drew Blood Drives for sickle cell anemia patients through the St. Louis Area Chapter of the American Red Cross. Dr. Charles Drew was an African-American physician who developed the blood and plasma storage system that revolutionized blood replacement in the medical profession. Drew also established the American Red Cross blood bank, of which he was the first director, and he organized the world’s first blood drive.
“When he learned there was a lack of African-American blood donors in St. Louis, DeBaun worked with the Red Cross, the churches and universities to address that problem,” said Dr. F. Sessions Cole, director of newborn medicine and chief medical officer at Saint Louis Children’s Hospital.
As a result of DeBaun’s work with area churches, Sickle Cell Sabbath blood drives are held annually at several St. Louis-area congregations and Charles Drew blood drives are now held throughout the nation.
