Self-improving collodion baby

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ORPHA:281122OMIM:242100Q80.2
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8Treatment centers

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Overview

Self-improving collodion baby (SICB) is a rare skin condition that is present at birth. Babies with this condition are born wrapped in a tight, shiny, transparent membrane called a collodion membrane. This membrane looks like a layer of plastic wrap or dried varnish covering the entire body. The membrane can restrict movement, cause the eyelids and lips to turn outward, and make it hard for the baby to feed and regulate body temperature. What makes this condition different from other collodion baby presentations is that the skin dramatically improves on its own over the first weeks to months of life. After the membrane naturally sheds, the skin underneath gradually becomes normal or near-normal, with only mild dryness or very subtle scaling remaining in some cases. Unlike other forms of ichthyosis where the collodion membrane is the first sign of a lifelong severe skin disorder, self-improving collodion baby has an excellent long-term outlook. Treatment in the newborn period focuses on supportive care, including keeping the skin moist, preventing infection, maintaining body temperature, and ensuring proper nutrition. Once the membrane has shed and the skin has improved, most children require only basic skin moisturizing. Genetic counseling is recommended for affected families.

Also known as:

Key symptoms:

Tight shiny membrane covering the body at birthRestricted movement of arms and legs due to the membraneEyelids turned outward (ectropion)Lips turned outward (eclabium)Difficulty feeding as a newbornProblems regulating body temperatureRisk of skin infections in the newborn periodCracking and peeling of the membrane over days to weeksMild skin dryness after the membrane shedsSubtle skin scaling that improves over time

Clinical phenotype terms (2)— hover any for plain English
Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

1 event
Feb 2026TMS for Inhibition Enhancement in Schizophrenia

University of Maryland, Baltimore — NA

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Self-improving collodion baby.

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No actively recruiting trials found for Self-improving collodion baby at this time.

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Search ClinicalTrials.gov ↗Join the Self-improving collodion baby community →

No specialists are currently listed for Self-improving collodion baby.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Self-improving collodion baby.

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Community

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Latest news about Self-improving collodion baby

Disease timeline:

New recruiting trial: TMS for Inhibition Enhancement in Schizophrenia

A new clinical trial is recruiting patients for Self-improving collodion baby

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

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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.How can you tell if my baby has the self-improving type versus a more severe form of ichthyosis?,Should we pursue genetic testing, and how long will results take?,What signs of complications should I watch for while my baby is in the NICU?,What skin care routine should I follow after my baby comes home from the hospital?,Will my baby have any long-term skin problems or other health issues?,What are the chances of having another baby with this condition in a future pregnancy?,Are there any specialists we should see for follow-up after leaving the hospital?

Common questions about Self-improving collodion baby

What is Self-improving collodion baby?

Self-improving collodion baby (SICB) is a rare skin condition that is present at birth. Babies with this condition are born wrapped in a tight, shiny, transparent membrane called a collodion membrane. This membrane looks like a layer of plastic wrap or dried varnish covering the entire body. The membrane can restrict movement, cause the eyelids and lips to turn outward, and make it hard for the baby to feed and regulate body temperature. What makes this condition different from other collodion baby presentations is that the skin dramatically improves on its own over the first weeks to months o

How is Self-improving collodion baby inherited?

Self-improving collodion baby follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Self-improving collodion baby typically begin?

Typical onset of Self-improving collodion baby is neonatal. Age of onset can vary across affected individuals.