Young Oklahoma patients get help managing chronic disease

As a patient at a children's hospital, Clark receives care, tutoring and even art lessons from doctors and nurses that she knows and trusts.

But that will soon end. For the past few weeks, Clark has been in a program called Transitions. The program helps teenage and young adult patients with chronic diseases transfer from The Children's Hospital to an adult facility. This is a big step for any juvenile patient.

“We all know them like they're our own friends, children and families,” said Clark's doctor, Dr. Olivera Couloures. “We're very close, and then they get into an adult unit with 150 patients and rotating doctors who don't know too much about anything about them, other than their labs, and it's a loss of that major support.”

Dialysis is a treatment for people whose kidneys aren't functioning properly. Dialysis filters a patient's blood, ridding the patient of harmful wastes, extra salt and water, according to the U.S. National Library of Medicine.

Children on dialysis are typically at the hospital three days a week for four hours, said Noel Jacobs, a pediatric psychologist at The Children's Hospital. They miss a lot of school, sometimes the entire day because they're so tired after dialysis. Staff at The Children's Hospital have seen some children who couldn't read.

“These are very strong kids, and they're resilient, but they face challenges that other children that don't have kidney disease don't have to face,” Jacobs said.

Many teenage or young adult dialysis patients at The Children's Hospital don't continue dialysis because they receive organ transplants and no longer need to be on dialysis.

But for Clark, finding a donor is more complicated. Clark has Alagille syndrome, an inherited disorder in which a person doesn't have enough bile ducts in the liver, according to the National Digestive Diseases Information Clearinghouse.

It's a complex disorder that can affect other parts of the body, including the heart, kidneys, blood vessels, eyes, face and skeleton, according to the clearinghouse. Alagille syndrome occurs in about one in every 70,000 births and is equally common in boys and girls.