Living with Peeling skin syndrome
A group of inherited conditions in which the skin peels and tears easily, usually painlessly.
Understanding Peeling skin syndrome
The main symptom is continual, usually painless, peeling of the skin. Some people also have itching, redness, and scarring. Symptoms can start anytime from birth to adulthood but usually by childhood. In the generalized form, most of the body is affected, and in the acral form it is limited to the hands and feet.
Signs & symptoms
Symptoms vary from person to person. GARD describes these:
- Continual skin peeling
- Skin that tears easily
- Itching
- Redness
- Scarring in some people
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.
- 4Connect with expert centers
Foundation for Ichthyosis and Related Skin Types may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Foundation for Ichthyosis and Related Skin Types
- 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 Foundation for Ichthyosis and Related Skin Types 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 several different genes cause this condition. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent.
Also known as: deciduous skin; familial continuous skin peeling syndrome; hereditary skin peeling syndrome; idiopathic deciduous skin; keratosis exfoliativa congenita; peeling skin disease
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesIchthyosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Peeling skin syndrome.
Explore research for Peeling skin syndrome
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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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