Overview
Neonatal scleroderma is an extremely rare skin condition that appears in newborns, characterized by hardening and thickening of the skin shortly after birth. The term 'scleroderma' means 'hard skin,' and when it occurs in the neonatal period (the first 28 days of life), it is classified separately from the more common forms of scleroderma seen in older children and adults. Affected babies may develop firm, tight patches of skin that can limit movement and cause discomfort. The skin may appear shiny, waxy, or discolored in the affected areas. In some cases, the hardening can extend to deeper tissues beneath the skin. Because this condition is so rare, the exact cause is not fully understood. It may overlap with or be confused with other neonatal skin conditions such as sclerema neonatorum or neonatal morphea. The treatment approach is mainly supportive, focusing on skin care, physical therapy to maintain movement, and monitoring for any complications that may affect internal organs. Early recognition and management by a team of specialists is important to give the baby the best possible outcome. The long-term course can vary widely depending on the severity and extent of skin involvement.
Key symptoms:
Hardening or thickening of the skinTight, shiny, or waxy-looking skinSkin discoloration (darker or lighter patches)Reduced movement of affected limbs or jointsStiff joints or difficulty bending arms and legsSkin that feels firm or woody to the touchPoor feeding due to tightened skin around the mouthRestricted chest wall movement affecting breathingSwelling of affected areasFailure to thrive or poor weight gain
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Neonatal scleroderma.
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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 Neonatal scleroderma.
Community
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Caregiver Resources
NORD Caregiver Resources
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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 much of my baby's body is affected, and is there any internal organ involvement?,What is the expected course of this condition for my child specifically?,What treatments do you recommend, and what are the potential side effects?,How often should my baby have follow-up appointments and with which specialists?,Are there any physical therapy or skin care routines I should start at home?,Should we consider genetic testing to rule out other conditions?,Are there any clinical trials or research studies we could participate in?
Common questions about Neonatal scleroderma
What is Neonatal scleroderma?
Neonatal scleroderma is an extremely rare skin condition that appears in newborns, characterized by hardening and thickening of the skin shortly after birth. The term 'scleroderma' means 'hard skin,' and when it occurs in the neonatal period (the first 28 days of life), it is classified separately from the more common forms of scleroderma seen in older children and adults. Affected babies may develop firm, tight patches of skin that can limit movement and cause discomfort. The skin may appear shiny, waxy, or discolored in the affected areas. In some cases, the hardening can extend to deeper ti
How is Neonatal scleroderma inherited?
Neonatal scleroderma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Neonatal scleroderma typically begin?
Typical onset of Neonatal scleroderma is neonatal. Age of onset can vary across affected individuals.
Which specialists treat Neonatal scleroderma?
11 specialists and care centers treating Neonatal scleroderma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.