Living with UV-sensitive syndrome
An inherited condition that makes skin very sensitive to sunlight, so even a little sun can cause sunburn.
Understanding UV-sensitive syndrome
Even a small amount of sun can cause sunburn. After repeated sun exposure, people may get freckles, dry skin, or color changes on sun-exposed skin. Some have small clusters of enlarged blood vessels (telangiectasia) on the cheeks and nose. GARD says their risk of skin cancer is not higher than in the general population.
Signs & symptoms
Symptoms vary from person to person. GARD describes these:
- Sunburn after a little sun
- Freckles on sun-exposed skin
- Dry skin
- Changes in skin color
- Small clusters of blood vessels on the cheeks and nose
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 skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- 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 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
GARD says a child inherits a changed copy of a gene from each parent (autosomal recessive). It doesn't name the gene.
Also known as: ultraviolet sensitive syndrome; uv (ultraviolet) sensitive syndrome; uvss - ultraviolet sensitive 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 UV-sensitive syndrome.
Explore research for UV-sensitive syndrome
Explore actively recruiting UV-sensitive syndrome studies with HealthSpark.
Find actively recruiting studies for UV-sensitive syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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