Living with Growth delay due to insulin-like growth factor type 1 deficiency
A rare genetic condition with slow growth before and after birth, hearing loss from the inner ear, and intellectual disability.
Understanding Growth delay due to insulin-like growth factor type 1 deficiency
People have slow growth before and after birth, sensorineural deafness (hearing loss from the inner ear), and intellectual disability. It begins during pregnancy, at birth, or in infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Slow growth before and after birth
- Hearing loss from birth (sensorineural)
- Small head size (microcephaly)
- Attention deficit hyperactivity disorder (ADHD)
- Insulin resistance
- Delayed bone maturation
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 IGF1 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 The MAGIC Foundation
- 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 IGF1 gene cause this condition. A child inherits a changed copy of the gene from each parent (autosomal recessive).
Also known as: growth delay-deafness- intellectual disability syndrome; growth delay-deafness-intellectual disability syndrome; growth delay-hearing loss-intellectual disability syndrome; growth delay, deafness, intellectual disability syndrome; growth retardation with deafness and mental retardation due to igf1 deficiency; igf-1 (insulin-like growth factor 1) deficiency
Patient organizations
- The MAGIC FoundationGrowth delay due to insulin-like growth factor type 1 deficiency · United States
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Perspectives from people navigating life with Growth delay due to insulin-like growth factor type 1 deficiency.
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