Teen with sickle cell wants to increase awareness of disease
Like any other 15-year-old girl, Klairyssa Poe has been known to talk back and roll her eyes. She has chores and homework and a boyfriend and spends way too much time on the telephone, at least according to her mother.
Her smooth, pretty face belies the pain she has endured, the numerous blood transfusions, the ache in her joints and back, and the sickle cell disease that, even when it’s not making her sick, is always in the background.
She is one of 60 young patients at Odessa Brown Children’s Clinic in Seattle.
While she wants people to treat her “the same as everybody else,” she’s also willing to step forward and share her story in the hopes of bringing greater awareness to a disease that she thinks gets too little attention.
“Everybody knows about cancer and HIV and AIDS,” she says. “But when you ask them, ‘Do you know what sickle cell is?’ they’ll say ‘no’ or ‘I’ve heard about it, but I don’t know all the facts.’”
For the record, sickle cell isn’t contagious, and it isn’t just “a black disease,” Klairyssa points out.
It’s an inherited blood disorder that affects the hemoglobin, or oxygen-carrying substance in red blood cells. The cells become hard and sickle- or crescent-shaped and don’t pass smoothly through small vessels the way normal, donut-shaped cells do.
When sickle cells block small vessels, they can cause pain, anemia, tissue damage, yellow eyes or jaundice, delayed growth and can lead to infections and other problems. More than 70,000 people in the United States have the disease, and about 1,000 babies each year are born with it.
Sickle cell is truly a global problem, showing up in people whose ancestors come from Africa, Central and South America, the Caribbean nations, Mediterranean countries, India and the Near East.
Klairyssa’s mother, Penny, is Caucasian and has a less common type of hemoglobin called Hemoglobin D, found in many parts of the world, including England, India, China and the Middle East. People with Hemoglobin D may have mild anemia, but are generally free of health problems.
When a person with a Hemoglobin D gene has a child with someone who has sickle-cell disease or trait (they carry the gene but don’t have the disease), they can have a child with sickle-Hemoglobin D disease, a form of sickle cell disease.
Klairyssa’s 11-year-old brother, Nicholas, who has a different father, is healthy, but he’s so used to late-night hospital waits that he’ll find a place on the floor to curl up and go to sleep. Once, when he was younger, he was afraid to go in for an ear infection because he thought he was going to get a Port-a-Cath placed in his chest.
“It affects the whole family,” Penny says.
The staff and doctors at the Odessa Brown clinic understand that. “The clinic is where we get all our support,” Penny says. “I love my doctor. I can call him day and night. He and the nurse will answer my page no matter what.”
The clinic also has social workers on staff to help patients with emotional issues, and offers classes, meetings and a summer camp for sickle cell families. “We’ve ordered pizza there at the clinic,” Penny says. “The whole family gets treated. Odessa Brown is awesome."
Penny says she didn’t know much about the disease until a blood test diagnosed Klairyssa’s sickle cell at age six. “She wasn’t diagnosed at birth,” she says. “She did cry a lot, but, since I’m not black, they never tested her for sickle cell.”
All states, including Washington, now screen newborns for sickle cell because early, proper care and health precautions can prevent potentially serious infections and head off painful episodes or “pain crises.”
Experts recommend that children with sickle cell disease take daily penicillin until age 6, get all their shots and see their doctors often for blood tests and check ups. They also advise daily folic acid supplements, drinking plenty of water, getting plenty of rest and avoiding extreme temperatures, over exertion and stress.
With good care, people with the disease can lead a relatively normal life, although some, like Klairyssa, will need blood transfusions, strong pain medicines and other treatments to help manage the disease.
Klairyssa gets what she describes as “a stabbing, dullish pain” that comes and goes, depending on the weather. Winter is worse than summer, but very hot days aren’t good either. She can’t jump into a cool lake or wade into Puget Sound like other kids.
But she can run and participate in sports. She can swim in a heated pool. And she can, and does, get good grades even though she misses a lot of school days to sickness and hospital stays. Since she started attending New Start, an alternative high school, she’s been a perfect student, her mother says proudly.
“She doesn’t want people to pity her,” Penny says, “even though, to live with this disease, to try to feel normal, is very hard sometimes. You have to live each day at a time and be positive.”
Klairyssa tries. She has dreams for the future like any other teenager. Right now her goal is to go into nursing and work with sickle cell patients.
“I can relate,” she says.
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