It is the most commonly inherited blood disorder in the U.S., and every year, roughly 2,000 babies are born with sickle cell disease. Now, one local center is helping patients manage this often painful and debilitating condition from day one.
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Life-changing treatment
One more check-up and 15-year-old Langston Bennett will be going in for the treatment he has been waiting for: a stem cell transplant to cure sickle cell disease
"I know this is another step to me becoming healthy and me becoming, you know, better and sickle cell free," he said.
Sickle cell is an inherited blood disorder and impacts about 100,000 people in the U.S., according to Dr. David Simon, the medical director of the Kaiser Permanente Regional Pediatric Sickle Cell and Hemoglobinopathy Center.
It's a genetic mutation that's predominantly found in African Americans that causes red blood cells to become crescent, or "sickle shaped." They do not bend or move easily and can block blood flow to the rest of the body.
"It causes a variety of complications, including strokes, frequent pain crises, pneumonias, kidney problems, all kinds of things," Simon said.
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Bennett said he sometimes feels a sharp pain in his chest. He rarely gets a pain crisis, but the possibility of it happening at any time interferes with living a normal teenage life.
"It is hard because it's like, 'Oh, I do want to be with my friends.' At the same time, I also want to be safe," he said.
When nurse practitioner Diane Batham began working with young sickle cell patients 30 years ago, she saw so many families lacking in resources and support.
"We establish that early relationship with them so they have someone to call whenever they have a need or have a question," she said.
At Kaiser Permanente's Regional Pediatric Sickle Cell and Hemoglobinopathy Center, early intervention takes on a new meaning.
"The center is composed of doctors, nurses, nurse practitioners, dietitians, social workers. It's designed to be a multi-disciplinary approach," Simon said.
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Currently, the center serves about 300 patients from age 18 all the way down to the prenatal stage.
"When there's a baby that's identified by the newborn screening program, we end up talking to the families right when they're born," Simon said.
That lifelong guidance is what led Bennett to consider a stem cell transplant with his brother as donor. Living with sickle cell disease made him a stronger person, and that is the message he has for other patients.
"Talk to somebody. You're not alone. I have to just use it as motivation. Just keep going," he said.