Living with Hypoinsulinemic hypoglycemia and body hemihypertrophy
A rare genetic condition with low blood sugar episodes in infancy and overgrowth on one side of the body.
Understanding Hypoinsulinemic hypoglycemia and body hemihypertrophy
Babies are born large (macrosomia). One side of the body grows more than the other, often the left. In infancy they have repeated, severe low blood sugar even though insulin is low, which can lead to reduced consciousness and seizures. It starts in newborns and infants.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Overgrowth of one side of the body
- Large birth weight
- Low blood sugar with coma
- Abnormal insulin levels
- Enlarged breast tissue in males
- Belly-area obesity
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
Specialists who may be involved include genetic specialists and hormone specialists.
- 3Consider genetic testing
Changes in AKT2 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- 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 rare disease patient organizations for support
- 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 the AKT2 gene cause this condition. It is autosomal dominant, meaning one changed copy of the gene can be enough to cause it.
Also known as: hypoinsulinemic hypoglycemia and hemihypertrophy
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Hypoinsulinemic hypoglycemia and body hemihypertrophy.
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