Raring to Go for CHI

Congenital Hyperinsulinism

Congenital Hyperinsulinism (HI) is a life-threatening genetic disorder that causes severe low blood sugar (hypoglycemia) in infants and children.

For those with HI, the beta cells of the pancreas secrete too much insulin in an unregulated manner. Excess insulin causes low blood sugar (hypoglycemia). Prolonged or severe low blood sugar can cause seizures, and/or permanent brain damage, and even death, if left untreated.

Timely diagnosis is crucial but often difficult because hypoglycemia is sometimes hard to detect in newborns. Once diagnosed, HI can be treated and those living with it can go on to lead full lives. Medication, surgery, and diet often play a role in the treatment and management of the disorder. Early intervention and special educational supports are sometimes needed for children with the disorder.

HI is a rare disorder occurring in 1/25,000 to 1/50,000 births varying by country.

What is CHI?

Congenital Hyperinsulinism International (CHI) is a grassroots organization founded in 2005 by parents of children with HI. CHI works closely with a group of leading international experts in the field who comprise our Scientific Advisory Group (http://congenitalhi.org/scientific-advisory-group/). CHI families work together to improve the lives of people affected by the disorder. CHI families are committed to providing education, information and support to people living with the disease. HI advocates on behalf of patients for better treatments and access to care. CHI is dedicated to increasing awareness of the disorder because it leads to more timely diagnosis and better care. CHI supports medical research for improved therapies, potential cures, and timely diagnosis. CHI works internationally because of a belief that international cooperation will foster creativity and advances in medicine.

Better treatments for HI can be found. Better access to quality healthcare for those with HI can become a reality. Better educated physicians and parents can improve the quality of life for those born with the disorder. A supportive community does improve the wellbeing of HI families. The CHI website www.congenitalhi.org is a great place to learn more about the condition and get involved.

Facts about Congenital Hyperinsulinism (HI)

  • HI can cause developmental delay and brain damage. Early diagnosis and excellent treatment and management of the disorder reduce the chances of lifelong disabilities.
  • HI is poorly understood by many physicians around the world. Increasing awareness of the disorder amongst physicians is key to early diagnosis and better care.
  • Many children with HI are mistakenly diagnosed with epilepsy when the underlying cause of seizures is hypoglycemia.
  • Maintaining blood sugar levels above 70 mg/dL (3.7 mmol/l) is crucial.
  • Symptoms of hyperinsulinism in newborns include: excessive hunger, irritability, sleepiness, shakiness, lethargy, seizures and sometimes larger than normal birth weight, blood sugar levels below 70 mg/dL (3.7 mmol/l).
  • In some cases HI can be cured with surgery. Medication and/or surgery help patients to achieve safe blood sugar levels.