Overview
Stevens-Johnson syndrome/toxic epidermal necrolysis overlap syndrome (SJS/TEN overlap) is a rare and serious skin condition where the body's immune system attacks the skin and mucous membranes. It sits between two related conditions: Stevens-Johnson syndrome (SJS), which is less severe, and toxic epidermal necrolysis (TEN), which is the most severe form. In SJS/TEN overlap, between 10% and 30% of the body's skin surface blisters and peels away, leaving raw, painful areas similar to severe burns. The condition also affects the moist linings of the body, including the eyes, mouth, throat, and genitals. The condition is almost always triggered by a medication — most commonly antibiotics like sulfonamides, anti-seizure drugs like carbamazepine and lamotrigine, allopurinol (used for gout), and certain HIV medications. Infections, particularly Mycoplasma pneumoniae, can also trigger it, especially in children. Symptoms usually begin within one to four weeks of starting a new medication and include flu-like feelings, a painful rash that spreads quickly, and blistering of the skin and mouth. Treatment requires urgent hospitalization, ideally in a specialized burn unit or intensive care unit. The triggering medication must be stopped immediately. Supportive care — including wound care, fluids, nutrition, and pain management — is the cornerstone of treatment. Some hospitals use immune-based treatments like intravenous immunoglobulin (IVIG) or cyclosporine, though evidence is still evolving. Early recognition and stopping the offending drug are the most important steps to improve survival.
Also known as:
Key symptoms:
Painful, spreading skin rash that starts on the face and chestBlisters forming on the skin that burst and leave raw, open areasSkin peeling off in sheetsSores and blisters inside the mouth, making eating and swallowing very painfulRed, painful, or swollen eyes — sometimes with dischargeFever and flu-like symptoms before the rash appearsBurning or stinging sensation on the skinBlisters or sores on the genitals or anusDifficulty swallowing or breathing if the throat is affectedSensitivity to lightFatigue and feeling very unwellSkin that looks like it has been scalded or burned
Multifactorial
Caused by a mix of several genes and environmental factors
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Stevens-Johnson syndrome/toxic epidermal necrolysis overlap syndrome.
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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 Stevens-Johnson syndrome/toxic epidermal necrolysis overlap syndrome.
Community
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Caregiver Resources
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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.Which medication caused my reaction, and how do I make sure I never take it or anything similar again?,Should I have genetic testing to find out if I am at higher risk from other medications?,What long-term complications should I watch for, and which specialists should I see regularly?,What treatments are you recommending for me, and what is the evidence behind them?,How do I protect my eyes, and when should I see an ophthalmologist?,Are there support groups or counseling services for SJS/TEN survivors?,What should I tell future doctors and pharmacists about my history to keep me safe?
Common questions about Stevens-Johnson syndrome/toxic epidermal necrolysis overlap syndrome
What is Stevens-Johnson syndrome/toxic epidermal necrolysis overlap syndrome?
Stevens-Johnson syndrome/toxic epidermal necrolysis overlap syndrome (SJS/TEN overlap) is a rare and serious skin condition where the body's immune system attacks the skin and mucous membranes. It sits between two related conditions: Stevens-Johnson syndrome (SJS), which is less severe, and toxic epidermal necrolysis (TEN), which is the most severe form. In SJS/TEN overlap, between 10% and 30% of the body's skin surface blisters and peels away, leaving raw, painful areas similar to severe burns. The condition also affects the moist linings of the body, including the eyes, mouth, throat, and ge
How is Stevens-Johnson syndrome/toxic epidermal necrolysis overlap syndrome inherited?
Stevens-Johnson syndrome/toxic epidermal necrolysis overlap syndrome follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Which specialists treat Stevens-Johnson syndrome/toxic epidermal necrolysis overlap syndrome?
1 specialists and care centers treating Stevens-Johnson syndrome/toxic epidermal necrolysis overlap syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.