Overview
Stevens-Johnson syndrome (SJS) is a rare but serious skin and mucous membrane disorder. It is sometimes called SJS for short. The condition causes the skin to blister, peel, and die in large patches, similar to a severe burn. The mucous membranes — the moist linings inside the mouth, eyes, nose, throat, and genitals — are almost always affected too. SJS is considered a medical emergency and requires immediate hospital care. In most cases, SJS is triggered by a reaction to a medication. Common triggers include antibiotics like sulfonamides, anti-seizure drugs such as carbamazepine and lamotrigine, allopurinol (used for gout), and certain pain relievers. Infections, especially with Mycoplasma pneumoniae, can also trigger SJS, particularly in children. The immune system mistakenly attacks the skin and lining tissues, causing widespread damage. Key symptoms include a painful red or purple rash that spreads quickly, blistering of the skin and mouth, peeling skin, fever, and sore eyes. Treatment focuses on stopping the triggering medication, managing pain, preventing infection, and supporting the body while it heals — similar to burn care. Most people are treated in a hospital, often in a burn unit or intensive care unit. Recovery can take weeks to months, and some people are left with lasting complications such as scarring, vision problems, or skin discoloration.
Also known as:
Key symptoms:
Painful red, purple, or dark rash that spreads quickly across the bodyBlisters forming on the skin and inside the mouth, eyes, nose, or genitalsSkin peeling off in sheetsHigh feverSore, red, or swollen eyesPainful swallowingMouth sores and ulcersBurning or stinging sensation on the skinFatigue and feeling very unwellDifficulty eating or drinking due to mouth painSensitivity to lightSwollen lips or tongue
Clinical phenotype terms (39)— hover any for plain English
Multifactorial
Caused by a mix of several genes and environmental factors
Variable
Can begin at different ages, from infancy through adulthood
Treatments
1 availableDyural 80-Lm
severe erythema multiforme (Stevens-Johnson syndrome)
Clinical Trials
View all trials with filters →No actively recruiting trials found for Stevens-Johnson syndrome at this time.
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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.
Community
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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 medication caused my SJS, and how do I make sure I never receive it again?,Should I be tested for HLA gene variants that increase my risk of reactions to other medications?,What long-term complications should I watch for, and how often should I be seen by specialists?,What treatments are you recommending for my case, and why?,How can I protect my eyes, and when should I see an eye specialist?,Are there support groups or counseling services for SJS survivors?,What should I tell other doctors, dentists, or pharmacists about my history of SJS?
Common questions about Stevens-Johnson syndrome
What is Stevens-Johnson syndrome?
Stevens-Johnson syndrome (SJS) is a rare but serious skin and mucous membrane disorder. It is sometimes called SJS for short. The condition causes the skin to blister, peel, and die in large patches, similar to a severe burn. The mucous membranes — the moist linings inside the mouth, eyes, nose, throat, and genitals — are almost always affected too. SJS is considered a medical emergency and requires immediate hospital care. In most cases, SJS is triggered by a reaction to a medication. Common triggers include antibiotics like sulfonamides, anti-seizure drugs such as carbamazepine and lamotrig
How is Stevens-Johnson syndrome inherited?
Stevens-Johnson syndrome follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Which specialists treat Stevens-Johnson syndrome?
12 specialists and care centers treating Stevens-Johnson syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.