Treatment for Hereditary Pancreatitis Allows Children to Live Pain-Free and Avoid Diabetes

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Pancreatitis, a painful inflammation of the pancreas, is sometimes associated with older people. But there is another form of pancreatitis—one that is hereditary and impacts infants and children. There is no cure, and often, these kids are left enduring a lifetime of pain. Now, a new treatment is helping them live a happy, pain-free life.

Lilah Ford’s pets pals kept her company when she was so sick, she couldn’t get out of bed.

“Like a sharp pain that would go from my stomach, like all the way to my back,” Lilah explained.

“Just every couple months it would hit and she'd be in constant pain for about a week,” shared Leah Ford, Lilah’s mom.

Born with hereditary pancreatitis, her dad knows first-hand the pain his daughter was dealing with.

“You couldn't even imagine. Having experienced that, knowing that she's got to live with that. [It's] terrible,” stated Joe Ford.

Dr. Jordan Winter, a pancreatic surgeon at University Hospitals Rainbow Babies & Children’s, removed Lilah’s gallbladder, spleen and most of her pancreas.

“If you take out the disease, the patient is often cured, which is really exciting,” said Winter.

But islet cells in the pancreas make insulin. Without one, diabetes is almost certain, almost, until now.

“What is really innovative as an option for patients with pancreatitis is the auto islet transfusion. We were able to give her islet cells, which make insulin, back to her,” said Winter.

Lilah’s diseased pancreas was taken to a lab and the islet cells were removed.

“The next day we take Lilah back to the operating room and infuse those islet cells directly into her liver. In that case, her liver becomes her new endocrine organ or insulin-producing organ,” explained Winter.

Lilah will need to check her insulin levels regularly, but so far so good.

“I don't have this pain anymore,” Lilah Ford said with a smile.

“Now she's basically as normal as it’s gets again. It's great to hear laughter,” said Joe Ford.

Doctors hope that in the future, researchers will not only be able to take islet cells from the existing pancreas but also regenerate even more in the lab, giving patients an even greater chance at not becoming diabetic. 

Contributors to this news report include: Marsha Lewis, Producer; Kirk Manson, Videographer; Roque Correa, Editor.

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