Living with Hutchinson-Gilford syndrome
A genetic condition in which signs of rapid aging begin in childhood, affecting growth, skin, hair, and arteries.
Understanding Hutchinson-Gilford syndrome
Children look typical at birth, then grow and gain weight more slowly. They develop a recognizable face with prominent eyes, a thin, beaked nose, thin lips, a small chin, and protruding ears. Other features are hair loss, aged-looking skin, joint differences, and loss of fat under the skin. Intelligence and motor skills such as walking are not affected. Arteries harden starting in childhood, which raises the chance of heart attack or stroke.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Slow growth and weight gain
- Hair loss (alopecia)
- Thin, aged-looking skin
- Loss of fat under the skin
- Heart valve differences
- Stiff, hardened arteries
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 bone and joint specialists, genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in LMNA 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
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- 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 Progeria Research Foundation, Inc. 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 the LMNA gene cause this condition. GARD lists autosomal dominant and autosomal recessive inheritance.
Also known as: hgps; hutchinson gilford syndrome; hutchinson-gilford disease; hutchinson-gilford progeria; hutchinson-gilford progeria syndrome; premature senility syndrome
Patient organizations
- Progeria Research Foundation, Inc.Hutchinson-Gilford syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Hutchinson-Gilford syndrome.
Explore research for Hutchinson-Gilford syndrome
Explore actively recruiting Hutchinson-Gilford syndrome studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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