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Chronic illness in childhood: One patient's story

Patients at the country's top children's hospitals are increasingly likely to be chronically ill. This ongoing trend in pediatric medicine might seem counterintuitive at first - isn't medical science supposed to be improving children's health?

The trend is, in fact, a byproduct of medical advances: Fewer kids now end up hospitalized with infectious diseases. At the same time, doctors have made big strides in saving the lives of babies and children who once would have died of conditions such as congenital deformities, cancer and genetic diseases. Those children have chronic medical needs.

And this raises the question: What is it like to be a child who lives with a chronic illness?

I recently got to see one inspiring answer to this question when I interviewed Santa Clara, Calif. 14-year-old Rahman Humphries and his mom, Natasha. Rahm, as he likes to be called, has been treated at Lucile Packard Children's Hospital since infancy for the genetic disease sickle cell anemia. But that's only a small part of who he is. Rahm is also a ninth grade student, a water polo player and a snowboarder. He has climbed part of Mt. Fuji and scuba dived off the California coast. And, as of February, he is an Eagle Scout.

My recently published story describes the relationship that Rahm and Natasha have forged with their Packard Children's caregivers, pediatric hematologist Michael Jeng, MD, and nurse practitioner Judie Lea, as they have learned to balance the challenges of managing sickle cell anemia with Rahm's desire to be a regular kid:

Rahm has the most severe form of sickle cell anemia, known as Hemoglobin SS, a genetic disease of the red blood cells. In this condition, physical stressors such as intense exercise can trigger painful "sickle cell crises" that carry a risk of serious complications, including strokes and pneumonia. After years of helping Rahm and Natasha manage these risks, Jeng and Lea knew that the Eagle Scout award represented an even bigger achievement for Rahm than for most other boys.

"Dr. Jeng has become almost a family member," Natasha said. "He knows Rahm has limits, but he also knows it's important to me that Rahm doesn't see sickle cell anemia as a handicap. Dr. Jeng tries to enable him as much as possible."

Previously: Rules for living with a chronic illness
Photo courtesy of the family

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