Hyperinsulinism Patient Stories
A diagnosis of hyperinsulinism brings with it unique challenges for each family it affects, and each family will cope in their own way. However, the experience can be made less overwhelming by hearing the stories of other families in similar situations. For that reason, some of the families in the Congenital Hyperinsulinism Center have shared their stories here, with the hope that they will ease the minds of other families facing similar diagnoses.
Focal KATP Hyperinsulinism
Lainie's journey included 3 ambulance rides and a plane trip on her way from Michigan to CHOP. Her focal hyperinsulinism was confirmed with a PET scan and cured with surgery.
Read Lainie's story
Lachlan traveled 35 hours from Perth, Australia, for treatment of his hyperinsulinism. Not sure whether his disease was focal or diffuse, it came down to the skill of surgeon Dr. Scott Adzick, who found the tiny focal lesion during surgery.
Read Lachlan's story
Mackenzie's focal hyperinsulinism was diagnosed when she was 3 months old. She traveled to CHOP from Massachusetts for treatment and surgery.
Read Mackenzie's story
Nathaniel traveled from Georgia to The Children's Hospital of Philadelphia for surgery to treat his focal KATP hyperinsulinism.
Read Nathaniel's story
Diffuse Hyperinsulinism
Rianna had 98% of her pancreas removed in infancy. The now 17-year-old discusses how she lives with diffuse HI on a daily basis.
Read Rianna's Story
HI/HA Syndrome
Natalie, diagnosed at two weeks with HI/HA syndrome, came to CHOP from California to ensure that her current treatment plan was the best one for her.
Read Natalie's story
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