Living with Werner syndrome
A genetic condition in which features of aging appear early in life, usually starting in the twenties.
Understanding Werner syndrome
People usually grow and develop normally until puberty, but often have no growth spurt and end up short. In their twenties, hair grays and thins, the voice turns hoarse, and the skin thins and hardens. Later they may develop cataracts, skin ulcers, type 2 diabetes, thin bones, and hardened arteries. Some types of cancer can occur.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Short stature
- Graying and loss of hair
- Hoarse voice
- Thin, hardened skin
- Cataracts in both eyes
- Insulin resistance and type 2 diabetes
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, cancer specialists, eye disease specialists and genetic specialists.
- 3Consider genetic testing
Changes in WRN 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); Cancer specialists (oncologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- 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 Children's Skin Disease 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
Werner syndrome is caused by changes in the WRN gene. A child inherits a changed copy of the gene from each parent (autosomal recessive).
Also known as: adult premature ageing syndrome; adult premature aging syndrome; adult progeria; pangeria; progeria of the adult; werner's syndrome
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- 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 Werner syndrome.
Explore research for Werner syndrome
Explore actively recruiting Werner syndrome studies with HealthSpark.
Find actively recruiting studies for Werner syndrome with HealthSpark. Share your city to explore research near you.
- 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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