Living with Growth delay due to insulin-like growth factor I resistance
A rare genetic condition in which the body doesn't respond to a growth signal (IGF-I), causing slow growth before and after birth.
Understanding Growth delay due to insulin-like growth factor I resistance
Growth delay varies, and people can also have varying degrees of intellectual disability, a small head, and distinct features such as a broad nasal bridge and tip, thin upper lip, short fingers, curved fingers, and a sunken chest. It usually starts in the newborn period or infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Slow growth
- Small head size (microcephaly)
- Intellectual disability
- Delayed motor skills
- Delayed bone maturation
- Sunken chest (pectus excavatum)
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 brain and nervous system specialists, genetic specialists and hormone specialists.
- 3Consider genetic testing
Changes in IGF1R 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
- Brain and nervous system specialists (neurologists); 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 IGF1R gene cause this condition. GARD lists both autosomal dominant and autosomal recessive inheritance.
Also known as: growth delay due to insulin-like growth factor 1 resistance; igf-1 (insulin-like growth factor 1) resistance; igf-1 resistance; igf-i resistance; insulin-like growth factor i resistance; insulin-like growth factor i, resistance to
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 Growth delay due to insulin-like growth factor I resistance.
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