Congenital Hyperinsulinism

Congenital hyperinsulinism (CHI) is a rare disease affecting newborns, infants, and children

CHI is caused by a defect in pancreatic beta-cells, resulting in the insulin overproduction and leading to frequent, recurrent and often severe episodes of low glucose (hypoglycemia). Every year, an estimated one in 28,000 to 50,000 newborns are diagnosed with genetically determined CHI in the U.S. and Europe.

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A significant burden for the affected children and their families

Frequent, recurrent and severe episodes of hypoglycemia in patients with CHI may result in brain damage. Complex care, including continuous enteral feeding or intravenous glucose, can result in lengthy and frequent hospitalizations that make daily life difficult. More than half of CHI patients may be sub-optimally treated with current therapies.

The most severely affected children may need to have their pancreas removed within months of birth to prevent hypoglycemia, which results in the development of life-long type 1 diabetes. The burden of managing CHI is significant for the affected children and their families and caregivers.

CHI leads to serious challenges for affected families. Brain injuries resulting in permanent disabilities occur all too frequently. There are also significant psychosocial effects as well as extra financial burdens on the family.

Julie Raskin

CEO, Congenital Hyperinsulinism International

Congenital Hyperinsulinism International

We work with patient communities to better understand the lives of people with severe medical conditions.

Congenital Hyperinsulinism International is a non-profit dedicated to improving the lives of children and adults living with congenital hyperinsulinism.

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    Patient stories

    Crosby was born with CHI

    Congenital Hyperinsulinism

    Julie and her husband, knew during pregnancy that Crosby, would be born with congenital hyperinsulinism (CHI): an ultra-rare genetic disorder that causes the insulin cells of the pancreas, called beta cells, to secrete too much insulin. The disorder may cause Crosby to have cognitive and physical disabilities if not treated adequately.

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