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Hyperinsulinism - a rare disease
Persistent Hyperinsulinaemic Hypoglycaemia of Infancy (PHHI) also known as familial hyperinsulinism, pancreatic nesidioblastosis or hyperinsulinaemic hypoglycaemia, is a rare genetic disease which can be inherited in a dominant or recessive way. It is mainly characterized by the presence of inappropriately high levels of insulin in parallel with low or very low glucose levels.

Pancreases of children with hyperinsulinism produce too much insulin - the opposite of diabetic children. Untreated, this can result in low blood sugar which may cause brain damage and other collateral effects. Fortunately, today there are many treatments for controlling hyperinsulinism. Babies diagnosed early can grow to be healthy adults.

This website is produced by and for parents and caregivers of children with hyperinsulinism. Its purpose is to provide a forum for parents to share their stories and their information informally. It is not a medical site and no medical reliance should be placed on it. Parents should consult their doctors for authoritative information.

Please note: The SUR1 website has a lot of excellent information that was collected through dedicated parents. Some of it may now be out of date. For more recent information for families of children with congenital hyperinsulinism, we invite you to visit, the website of Congenital Hyperinsulinism International.

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