Happy Campers : Sickle Cell Anemia Sufferers Find Fun and Inspiration at Summer Gathering

Under live oaks and towering sycamores on a ranch tucked away in the Santa Ana Mountains, 105 kids sing campfire songs, cook hot dogs and talk of life expectancy.

The kids, at the oldest camp for sickle cell anemia patients in the country, have heard the odds--many die of the disease in childhood.

But on Wednesday, KNBC-TV weatherman Christopher Nance, 41, who has the illness, told the campers to make their own odds, the way he did. At age 5, he heard his doctor tell his mother that sickle cell anemia would kill him before he reached his teens.

“I figured, ‘Gee, I’m not going to live very long,’ ” Nance told the campers. “ ‘I’m not going to study in school, I’m not going to play with my friends, I’m not going to do anything I don’t want to do.’ ”

But he realized he had the choice to fight for his health.

“If you have faith in the man upstairs, and you have the desire to take care of yourself, you can live as healthy a life as almost anyone else,” he said.

The campers, ages 7 to 14, listened quietly in an outdoor amphitheater, a sleepy creek trickling behind them. Only a few minutes before, the group had wriggled their hips and waved their hands to a rousing camp song, “Chiga Chiga.”

At Sickle Cell Summer Camp, kids hike, swim and work at handicrafts, but they also go to classes on hemoglobin, take frequent rest breaks and always carry water bottles with them.

Sickle cell anemia is an inherited disease, caused by abnormal hemoglobin in red blood cells, resulting in chronic and severe anemia. It primarily affects African Americans.

The 28-year-old camp is sponsored by the nonprofit Sickle Cell Disease Research Foundation in Los Angeles, the first of its kind in the country and the only one in the West. Campers from several Western states attend the weeklong camp, which is funded mostly by donations. Campers pay only a $25 fee for the week.

The camp was established in San Juan Capistrano, far enough from the city to feel like camp but not at a high elevation, which can cause problems for people with sickle cell disease, said Mary E. Brown, camp executive director.

There is no cure for the illness, but it can be controlled with preventive health care measures such as proper diet, rest and drinking plenty of fluids. Patients can have long periods of illness, extreme fatigue and severe pain.

As a child, Nance said he knew nothing of the disease that the doctor said would kill him.

“These kids know more about sickle cell disease than I did when I was two or three times their age,” said Nance, a longtime volunteer for the sickle cell foundation.

He told the campers about the rigorous schedule he keeps to be at work for the 5:30 a.m. news: Bed at 5 p.m., up at 1 a.m., at his desk by 3 a.m. to prepare for his weather report.

Afterward, campers said they could not believe a TV celebrity suffered from the same disease as they.

Charles McLemore, 14, said he felt less alone after hearing Nance’s impassioned speech. Sometimes, he said, he feels alone because he can’t play football with his friends.

“It made me happy,” said Charles, who wore a backward baseball cap and baggy jeans. “I forgot about the pain a little. Someday, I hope I can reach his age and be successful like him and come back and tell the kids about my life.”

LaBrent Harvey, 14, of Fresno said he wants to take better care of himself, as Nance does. Sometimes he just wants to be a kid and stay up until midnight, talking with friends. Today he is tired, so he won’t go swimming. He couldn’t believe Nance’s schedule.

“Whoa, it shocked me to have a job like that and waking up early,” LaBrent said. “How could he have a job like that and [have sickle cell]?”

And LaBrent said he was relieved to hear that numbers don’t always tell the story.

When he was 8, he said, his doctor said LaBrent would be dead by age 12.

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Blood Lines

Sickle cell anemia is a hereditary blood disease in which red cells mutate. The result is a severe reduction in the blood’s capacity to carry oxygen. There is no cure, but researchers are seeking treatments to prevent red blood cells from sickling. An overview of sickle cell anemia:

Cause

* Disease occurs when red blood cells lack normal hemoglobin--a substance that carries oxygen from lungs to body tissue.

* Abnormal (sickled) cells become trapped in capillaries and block oxygen flow.

Traits

* Sickle cell occurs when person inherits hemoglobin S from both parents.

* If hemoglobin S is inherited from only one parent, trait may be carried but not cause cells to sickle.

* If two trait carriers have a child, chances are one in four that the child will have anemia, one in two that it will carry the trait, and one in four that it will neither have the disease nor carry the trait.

Incidence

* Occurs primarily in blacks, and less commonly in Hispanics.

* About one in 10 blacks in United States is born with cells half normal and half sickle hemoglobin.

* One in 400 U.S. blacks is born with sickle cell anemia.

Signs

* Symptoms may occur after birth and include fatigue, headaches, shortness of breath, pallor and jaundice. Long-term symptoms include gallstones, repeated bouts with pneumonia.

* Dehydration or hypothermia may cause anemia crisis, causing sudden chronic pain, blood in urine, lung or intestinal damage, seizures and strokes.

Treatment

* Lifelong course of folic acid supplements

* Penicillin to guard against pneumonia

Sources: American Medical Assn. Encyclopedia of Medicine, World Book Encyclopedia; Researched by APRIL JACKSON / Los Angeles Times

Los Angeles Times