Mind the Gap atlas
Stevens-Johnson syndrome / toxic epidermal necrolysis on Black skin
Key cue: Painful rash + mucosal sloughing (mouth, eyes, genitals) after a new medication. Pain disproportionate to visible lesions is a warning.
Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are severe, delayed drug hypersensitivity reactions in which the epidermis detaches from the dermis in large sheets. They are part of the same disease spectrum (SJS < 10% body surface area, TEN > 30%) with mortality of 5-50% depending on extent. Rapid recognition, withdrawal of the offending drug, and ICU/burn-unit care are life-saving.
What it actually looks like
Textbook says
Textbook description: 1-3 weeks after a new drug (most often allopurinol, lamotrigine, carbamazepine, phenytoin, sulfonamides, nevirapine, or NSAIDs), the patient develops flu-like symptoms followed by a painful red-purple rash that progresses to bullae (blisters) and sheet-like sloughing. Images show the characteristic dusky red/purple macules with overlying flaccid blisters on a light-skin background.
On Black skin
Several features of SJS/TEN are more difficult to recognise on darker skin and were highlighted in the J Am Acad Dermatol 2021 review of skin-of-colour emergencies:
- The early erythematous macules can look like subtle dusky discolouration or hyperpigmentation rather than the bright red of textbook photos. Target-like lesions may have a subtle violaceous or dark-brown rim rather than a red one.
- Pain out of proportion to visible findings is a major clue and is skin-colour-independent. If a patient reports severe burning or tenderness of the skin with only mild visible changes, take it seriously.
- The Nikolsky sign (gentle lateral pressure causes the epidermis to slide off) is a bedside test that works on any skin tone.
- Mucosal involvement — painful erosions in the mouth, eyes (conjunctivitis with corneal involvement), genital/perianal skin — appears identically on all skin tones and is often the most visible and specific finding. Look for haemorrhagic crusts on the lips.
- Post-inflammatory hyperpigmentation following SJS/TEN is far more severe on Black skin and can last months to years.
Genetic susceptibility varies by ancestry: HLA-B*15:02 (carbamazepine-induced SJS) is most common in patients of Southeast Asian and South Asian ancestry, and HLA-B*58:01 (allopurinol SJS) has its highest prevalence in Han Chinese, Thai, and Korean populations — but screening recommendations vary by population. Discuss HLA testing before starting allopurinol or carbamazepine if you are from a high-risk ancestral group.
What to look for
- Any new painful rash in a patient who started a medication within the past 8 weeks — especially allopurinol, lamotrigine, carbamazepine, phenytoin, trimethoprim-sulfamethoxazole, nevirapine, or NSAIDs.
- Sore or peeling mouth, painful swallowing, red eyes, or genital/perianal pain in this setting.
- Fever, malaise, arthralgia preceding the rash.
- Skin tenderness (touching the skin hurts, even where it looks normal).
- Any blistering, sloughing, or 'peeling-like-a-burn' skin.
Emergent — call 911 or go to the ER
Go to the ER immediately. SJS/TEN is a dermatologic emergency requiring admission — often to a burn unit — and immediate withdrawal of the offending drug. Bring all medication bottles (including any started in the previous 8 weeks), any supplements, and any over-the-counter drugs with you. Delay in drug discontinuation is the single most important modifiable mortality factor.
Common misdiagnosis
Early SJS/TEN on Black skin is often misdiagnosed as a viral exanthem, a simple drug rash, oral candidiasis, or a bad cold sore (for the mucosal lesions). The key distinguishing features — pain, mucosal involvement, Nikolsky sign, and rapid progression — reliably separate SJS/TEN from simpler drug eruptions. When in doubt, the rule is: stop the drug, go to the ER.
See it for yourself — curated external imagery
We don't host clinical photos here. The links below go to peer-reviewed or open-access sources (Mind the Gap, DermNet NZ, PubMed Central, and similar). Each opens in a new tab.
- DermNet NZ — SJS/TEN — comprehensive image set with skin-of-colour examples, mucosal findings, and Nikolsky demonstration.
- Mind the Gap handbook — SJS plate.
- PMC — SJS/TEN in skin of colour (JAAD 2021) — open-access review with clinical images.
- SJS Foundation photo gallery — survivor photos across skin tones.
References
- Dodiuk-Gad RP, Chung WH, Valeyrie-Allanore L, Shear NH. Stevens-Johnson syndrome and toxic epidermal necrolysis: an update. Am J Clin Dermatol. 2015;16(6):475-93. PMID: 26481651.
- Roujeau JC, Kelly JP, Naldi L, et al. Medication use and the risk of Stevens-Johnson syndrome or toxic epidermal necrolysis. N Engl J Med. 1995;333(24):1600-7. PMID: 7477195.
- Harp J, Chen D, Patel K, et al. Severe cutaneous adverse reactions in the United States: racial and ethnic disparities in HLA-B screening. J Am Acad Dermatol. 2021;85(3):749-755. PMID: 33961963.
- Chung WH, Hung SI, Hong HS, et al. Medical genetics: a marker for Stevens-Johnson syndrome. Nature. 2004;428(6982):486. PMID: 15057820.
Medical disclaimer
Educational content only. This is not a substitute for in-person evaluation. If you are worried about yourself or someone you love, see a clinician — and if you are concerned about an emergency sign described here, call 911 or your local emergency number. We do not host clinical imagery; the external references are for reader self-education and are not owned by or affiliated with Black Health.