Living with Growth hormone insensitivity syndrome
A group of conditions with marked short stature even though the body has normal or high growth hormone, because the body doesn't respond to it.
Understanding Growth hormone insensitivity syndrome
The body fails to respond to growth hormone given as a treatment. GHIS includes growth delay due to IGF-1 deficiency, growth delay due to IGF-1 resistance, Laron syndrome, short stature due to STAT5b deficiency, and primary acid-labile subunit (ALS) deficiency.
Signs & symptoms
GARD doesn't list specific symptoms for this condition. The summary describes marked short stature.
- Marked short stature
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Little People of America may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: Little People of America
- 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 Little People of America and other patient organizations
- 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 cause this condition. GARD does not name the gene here, but lists several related conditions grouped within GHIS.
Also known as: ghis; growth hormone insensitivity syndromes; short stature due to a defect in growth hormone receptor or post-receptor pathway
Patient organizations
- Little People of AmericaGrowth hormone insensitivity syndrome · United States
- Human Growth FoundationGrowth hormone insensitivity syndrome · United States
- The MAGIC FoundationGrowth hormone insensitivity syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Growth hormone insensitivity syndrome.
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