Congenital HI Patient Stories

With a dual diagnosis of two genetic conditions, Dominic’s family came from California to CHOP during the pandemic to ensure he got the specialized care he needed.

The partnership between her doctors at The Congenital Hyperinsulinism Center at CHOP and her local medical team in California is keeping Alina healthy and allowing her to be a typical toddler. However, her beginning was anything but typical.

A CHOP research study seeks to even out the ups and downs of post-pancreatectomy diabetes. Jenny, who has hyperinsulinism, can’t wait for the results.

The rare is commonplace at CHOP, and for children with extremely low blood sugar from hyperinsulinism, that expertise changes lives, as Ben’s family learned.

Congenital hyperinsulinism is rare — 1 in 50,000 births — and Paige had a rare type of HI. But CHOP’s expertise allowed her to be cured.

The combination of a barking dog, an alert local endocrinologist, and the experts at CHOP’s Congenital Hyperinsulinism Center gave Adriana the best result possible: a cure.

Alaya's family traveled from North Carolina seeking the expertise of CHOP’s Congenital Hyperinsulinism Center. She became the 500th baby to have a pancreatectomy at CHOP.

Siblings Lily and Landon were both treated for congenital hyperinsulinism at Children's Hospital of Philadelphia. 

When her daughter's HI/HA was well managed, this mom turned her attention to advocating for her child's needs at school.

Óðinn Orri Sævarsson was born with a potentially life-threatening disease rarely seen in Iceland, congenital hyperinsulinism (HI). Quick action and a team effort between Icelandic specialists and CHOP's International Patient Services got Óðinn to CHOP for treatment, where he was cured.