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Teen relishes sickle cell camp, where there's no need to explain

By Pam McGaffin

Outside of the camp she attends each summer, 15-year-old Tiara Boutte doesn't have any friends with Sickle Cell in common.

Outside of camp, she gets questions: "Didn't you just go to the doctor's?"

"It's hard for people who don't have it to really understand it," says the Renton High School sophomore, who gets tired of explaining the disease for that very reason.

But at the Sickle Cell Camp, she doesn't have to tell anyone how and why she's different. At camp, she can relax and be herself.

"It's always fun," says Tiara, who is a summer regular at the camp put on by the Charles Drew Foundation and the Metropolitan Sickle Cell Task Force. The two nonprofit organizations raise money for sickle cell events and work to increase community awareness around the disease.

Tiara, a patient at the Odessa Brown Sickle Cell Clinic, is relatively fortunate as sickle cell cases go. Her experiences with the disease have been mild compared to some of her friends at camp. Since her gallbladder was removed four and a half years ago, she's been fine for the most part.

That's not to say that sickle cell doesn't continue to affect her. It will always influence her life in small and large ways. On the small side, there are those frequent doctor visits; on the large side, there is love and marriage and the future. Since sickle cell is genetic, she risks passing the disease on to her future children.

Tiara's mother and father both have sickle cell trait, meaning they both carry a single gene for sickle cell, but don't have the disease. Tiara represents their one in four chance of having a child with the disease. Tiara's older brother, Terrence, and her younger brother, Savion, beat the odds. They don't have the trait or the disease.

Tiara likely was diagnosed at birth, but Shirelle says she was focused on whether her premature child would live at all.

Four years later, a health and nutrition program for women and children alerted Shirelle to abnormalities in her daughter's blood work, revealed in tests, and referred the family to the Odessa Brown Sickle Cell clinic.

Classes at the clinic opened Shirelle's eyes to the disease, its dangers and the steps parents can take to keep their children healthy. Experts recommend that children with sickle cell get daily doses of penicillin until age six to prevent the potentially fatal infections that used to kill many children with the disease.

Parents also are urged to make sure their children with sickle cell drink plenty of water, get enough sleep, and see the doctor often for tests and blood checkups.

Through the classes, Shirelle learned all about the symptoms her daughter, up till then, was fortunate enough not to have.

That's how Shirelle knew that summer day about eight years ago that Tiara was experiencing her first "pain crisis."

"She went swimming in a lake," Shirelle says. "The next day, she was hollering, screaming and crying, complaining that her legs hurt, her arms hurt, everything hurt."

The crisis, which lasted three long days, was likely triggered by Tiara's exposure to the cold lake water.

Inside her body, the sharp crescent- or sickle-shaped red blood cells were jamming up in her small blood vessels, particularly at her joints.

Besides causing pain and anemia, sickle cells also can lead to tissue damage, yellow eyes or jaundice, delayed growth, and infections.

More than 70,000 people in the United States have the disease, and about 1,000 babies each year are born with it.

The genetic mutation, which affects the hemoglobin, or oxygen-carrying component of red blood cells, has been a survival advantage in malaria-plagued areas of the globe. Consequently, it's most prevalent in people who's ancestors come from Africa, Central and South America, the Caribbean nations, Mediterranean countries, India and the Near East.

Every now and then Tiara will do a school report on sickle cell. "I think people need to know more," she says.

The Odessa Brown clinic helped her to understand the disease and its varied symptoms, she says. Early on, the pain focused in the bends of her body, including her knees, elbows and wrists. When she turned 10 or so, it shifted to her internal organs, giving her stomach aches and cramps.

Many a Thanksgiving and Christmas was spent in the emergency room at Children's Hospital, recalls her mother. Odessa Brown pediatrician Dr. Ben Danielson always came to meet them, no matter the holiday, Shirelle says.

The stomach aches and cramps have subsided since Tiara's gallbladder was removed the day after Thanksgiving 2001. She still needs to get more physical checkups than most kids her age. At least two a year are recommended, three for those who play sports.

Tiara always gets a sickle-cell workup before heading off to summer camp.

Where she never, ever hears, "Didn't you just go to the doctor's?"

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