Living with Stevens-Johnson syndrome
A very severe reaction, most often to a medicine, that makes skin blister and peel and affects the eyes and mouth.
Understanding Stevens-Johnson syndrome
It is most often triggered by medicines. The mucous membranes of the eyes, mouth, and genitals are also commonly affected. SJS and TEN are two ends of one spectrum, and it is called SJS when less than 10% of the body surface is involved. All forms are a medical emergency. It often starts with fever and flu-like symptoms. A red or purplish rash forms within 1 to 3 days, and then skin blisters and peels.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fever and flu-like symptoms
- Red or purplish rash
- Skin blisters and painful raw areas
- Severe eye redness (conjunctivitis)
- Mouth sores and trouble swallowing
- Genital pain or trouble urinating
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include eye disease specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Children's Skin Disease Foundation
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
It is often triggered by certain medicines, such as allopurinol, anti-seizure drugs, pain relievers, cancer therapies, or antibiotics. Infections can also trigger it, and in many cases no cause is found.
Also known as: dermatostomatitis, stevens johnson type; stevens johnson syndrome
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Stevens-Johnson syndrome.
Explore research for Stevens-Johnson syndrome
Explore actively recruiting Stevens-Johnson syndrome studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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