Living with Hyperinsulinemic hypoglycemia, familial, 2
An inherited condition in which too much insulin leads to repeated low blood sugar, starting in infancy or early childhood.
Understanding Hyperinsulinemic hypoglycemia, familial, 2
Insulin is the hormone that helps control blood sugar. In infants and young children, low blood sugar can cause low energy, irritability, or trouble feeding. Repeated episodes raise the risk of serious problems such as seizures, intellectual disability, and vision loss. Severity varies, even within a family. Episodes can occur after eating as well as after fasting.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Low blood sugar (hypoglycemia)
- Low energy (lethargy)
- Irritability
- Trouble feeding
- Large birth weight
- Overgrown insulin-making cells in the pancreas
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Congenital Hyperinsulinism International
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in genes (also called variants) cause this condition. GARD lists autosomal recessive inheritance, so a child inherits a changed copy of the gene from each parent.
Also known as: hyperinsulinemic hypoglycemia (disease) caused by mutation in kcnj11; hyperinsulinemic hypoglycemia due to kir6.2 deficiency; hyperinsulinemic hypoglycemia, familial, type 2; hyperinsulinemic hypoglycemia, persistent; hyperinsulinism, neonatal; kcnj11 hyperinsulinemic hypoglycemia (disease)
Patient organizations
- Congenital Hyperinsulinism InternationalHyperinsulinemic hypoglycemia, familial, 2 · United States
You are more than your diagnosis
Perspectives from people navigating life with Hyperinsulinemic hypoglycemia, familial, 2.
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