Overview
Peeling skin syndrome (PSS) is a rare inherited skin disorder where the outer layer of skin continuously peels away on its own, without any obvious injury or irritation. This happens because the skin cells do not stick together properly, causing the top layer to separate and shed. The condition is also sometimes called 'deciduous skin' or 'keratolysis exfoliativa congenita.' There are different types of peeling skin syndrome. Some types affect the whole body (generalized), while others mainly affect the hands and feet (localized). Some forms also cause redness and itching, while others cause peeling with little or no inflammation. The skin peeling is usually painless but can be uncomfortable and may worsen with heat, humidity, or friction. In some types, the condition is present from birth or early childhood and lasts throughout life. Other symptoms can include redness, blistering, and in some forms, short stature or other features. There is no cure for peeling skin syndrome, but treatment focuses on protecting the skin, keeping it moisturized, and managing symptoms. Most people with this condition can live a normal lifespan, though the skin problems require ongoing daily care and attention.
Also known as:
Key symptoms:
Continuous peeling of the outer skin layer without injurySkin that comes off in sheets or flakesRedness of the skin (in inflammatory types)Itching or irritationBlistering, especially after minor friction or heatSkin that looks fragile or thinWorsening of peeling in warm or humid weatherShort stature (in some types)Mild to moderate pain or discomfort in affected areasRecurrent skin infections due to the broken skin barrier
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
10 eventsCase Western Reserve University — NA
University of Alabama, Tuscaloosa — NA
KU Leuven — NA
University of Texas Southwestern Medical Center — NA
China-Japan Friendship Hospital — NA
Northwestern University — PHASE2
Columbia University — NA
Sha Research Foundation — NA
University of Texas Southwestern Medical Center — NA
Sohag University — PHASE2, PHASE3
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
2 availableDermacure
Urea is useful for the treatment of hyperkeratotic conditions such as dry, rough skin
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Urea is useful for the treatment of hyperkeratotic conditions such as dry, rough skin
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Peeling skin syndrome.
Community
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Start the conversation →Latest news about Peeling skin syndrome
Disease timeline:
New recruiting trial: Validation of Scales in Reconstructive Breast Surgery
A new clinical trial is recruiting patients for Peeling skin syndrome
New recruiting trial: Impact of Serial Bedside Video Calls on Stress Level in Parents of Infants Admitted to NICU
A new clinical trial is recruiting patients for Peeling skin syndrome
New recruiting trial: New Clinical End-points in Patients With Primary Sjögren's Syndrome
A new clinical trial is recruiting patients for Peeling skin syndrome
New recruiting trial: Teen Recovery Through Inspiration, Support, and Empowerment
A new clinical trial is recruiting patients for Peeling skin syndrome
New recruiting trial: Recovery Through Inspiration, Support, and Empowerment
A new clinical trial is recruiting patients for Peeling skin syndrome
New recruiting trial: The Effects of Mindfulness Practice With Tao Art (Love Peace Harmony Calligraphy and Song) on Well-being
A new clinical trial is recruiting patients for Peeling skin syndrome
New recruiting trial: Prescription Support System for Antimicrobial Use in Belgian Primary Care
A new clinical trial is recruiting patients for Peeling skin syndrome
New recruiting trial: Impact of OnabotulinumtoxinA (BOTOX®) on Stress
A new clinical trial is recruiting patients for Peeling skin syndrome
New recruiting trial: Youth Empowerment and Safety Intervention
A new clinical trial is recruiting patients for Peeling skin syndrome
New recruiting trial: The ASSESS National Multi-center Prospective Cohort
A new clinical trial is recruiting patients for Peeling skin syndrome
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Which specific type of peeling skin syndrome do I or my child have, and which gene is affected?,What skin care routine do you recommend, and which moisturizers or creams work best for this condition?,Are there any activities or environments I should avoid to prevent worsening of symptoms?,What are the signs of a skin infection I should watch for, and when should I seek emergency care?,Should other family members be tested for this condition?,Are there any clinical trials or new treatments being studied that I might be eligible for?,Can you refer me to a patient support group or connect me with other families affected by this condition?
Common questions about Peeling skin syndrome
What is Peeling skin syndrome?
Peeling skin syndrome (PSS) is a rare inherited skin disorder where the outer layer of skin continuously peels away on its own, without any obvious injury or irritation. This happens because the skin cells do not stick together properly, causing the top layer to separate and shed. The condition is also sometimes called 'deciduous skin' or 'keratolysis exfoliativa congenita.' There are different types of peeling skin syndrome. Some types affect the whole body (generalized), while others mainly affect the hands and feet (localized). Some forms also cause redness and itching, while others cause p
How is Peeling skin syndrome inherited?
Peeling skin syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Peeling skin syndrome typically begin?
Typical onset of Peeling skin syndrome is neonatal. Age of onset can vary across affected individuals.
Are there clinical trials for Peeling skin syndrome?
Yes — 1 recruiting clinical trial is currently listed for Peeling skin syndrome on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Peeling skin syndrome?
19 specialists and care centers treating Peeling skin syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.