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Growing Up With Sickle Cell Disease : At an Age When Peer Acceptance Means Everything, Thousands of Youths--Most of Them African Americans--Feel Like Oddities as They Cope With an Illness That Robs Them of a Normal LIfe.

March 05, 1995|LUCILLE RENWICK

Marc Hull was too young to remember his first sickle cell crisis. It was Jan. 3, 1979, and he was 18 months old.

He had a temperature of 107, his mother, Melva Leflores, recalled. He was near death, suffering from a host of related complications: blood and bone infections, salmonella and pneumonia.

Now at 17, having endured several dozen painful attacks in his short life, and making monthly visits to the hospital because of problems with his bones and tissues from sickle cell disease, Hull is fed up with his illness.

"I'm not normal because I have an illness," he said. "Normal don't have to worry about doctor's bills or 'If I have a really bad crisis, will I die? I try to put it out of my mind, but sometimes I still think, 'Why does this happen to me?'

"When I start thinking about the future, I get worried," Hull said. "Then I get angry because I wonder why I have (sickle cell disease) and get sick all the time."

Hull, who lives with his mother in South-Central Los Angeles, is like hundreds of other teen-agers in the city and thousands more in Southern California--most of them African Americans--who must cope with the frustrating, debilitating disease.

There is help, through the pioneering Crenshaw-based Sickle Cell Disease Research Foundation, which provides referrals for treatment and counseling. But the painful incidents, blood transfusions, repeated trips to hospital emergency rooms and the difficulty of explaining the illness to others can be draining and discouraging. Add being a child or a teen-ager to the equation and it becomes almost unbearable.

"Sickle cell disease is difficult for the smaller children, but it's especially hard for the teen-agers because of the social issues teens go through," said June Vavasseur, a retired social worker who spent 12 years working with sickle cell disease patients at a County-USC Medical Center.

At an age when image and acceptance by peers means everything, many teen-agers and some younger children with sickle cell disease feel like oddities. As many of them see it, they have been cheated with a life in which they can't participate in athletics like their peers. They also fear being ostracized by friends if they disclose their disease.

"Their bodies are changing, they're becoming adults, yet they don't want to be different. They want to be liked by their friends," Vavasseur said.

Rafael, a 17-year-old junior at Venice High School, is embarrassed about having sickle cell disease, so much so that for this article, he asked that his first name be changed and that his last name not be mentioned. He has only told one friend about his illness, and he makes up excuses for others.

"It makes me feel like I wouldn't have as many friends," Rafael said as he received his monthly blood transfusion. The transfusions reduce the severity of painful attacks, or crises, cause by his sickle cell disease.

"It's like if I told everyone, then everyone won't want to hang around with me as much," he said.

The perception of sickle cell disease is the antithesis of what the disease actually is, Rafael and other youths say.

"People think like if you're near them or if you spit on them, they're going to catch something," one teen-ager said during a recent weekend retreat for teen-agers with sickle cell disease. "It ain't like that."

Sickle cell disease is a non-contagious blood disorder caused by a defect in the gene for red blood cells, which carry oxygen throughout the body. Sickle cell anemia is the most common form of the disease.

Though it has become mislabeled as a "black disease" because of the disproportionate number of African Americans with it, sickle cell disease is also found among Latinos, Greeks, Italians (especially Sicilians), in Asiatic Indians, Iranians and Middle Easterners. Those of African, Asiatic Indian or Mediterranean ancestry are most prone to the disease because the genetic defect prospered, ironically, as a natural defense against malaria in those geographic regions.

Each year, in a state-mandated blood test for newborns, about 150 are found to have sickle cell disease, the majority of whom are African American, according to the Sickle Cell Disease Research Foundation. One out of 185 Latino newborn babies have the sickle cell trait, which means they may pass the disease on to their children if their partner also has the trait.

Sickle cell trait itself is asymptomatic, but if both parents have the trait, their child has a 25% chance of having the disease. Nationwide, experts estimate that about 72,000 blacks have sickle cell disease. One in 12 African Americans in Los Angeles has sickle cell trait, and about 5,000 suffer from the disease in Los Angeles and elsewhere in Southern California.

Sickle cell disease affects each person differently, although almost all experience periodic painful crises, some more frequently than others.

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