Recognizing and Addressing SJS/TEN in Skin of Color

Stevens–Johnson yndrome (SJS) and toxic epidermal necrolysis (TEN) are rare, life-threatening skin reactions that can affect anyone. However, patients with darker skin tones may face unique risks, challenges, and outcomes that are often overlooked in both research and medical education.

Diagnostic Challenges in Skin of Color

SJS/TEN often begins with a painful rash, blisters, and mucosal involvement. In lighter skin, these changes appear as red or dusky erythema, making them easier to identify. In contrast, on darker skin, rashes may look purple, gray, or violaceous, which can delay recognition and lead to misdiagnosis. A case report of a young Black woman illustrated how her early symptoms were mistaken for allergic reactions and conjunctivitis before SJS was correctly diagnosed¹.

Severity of Ocular Complications

Patients with darker phototypes (or darker skin colours) (Fitzpatrick Scale skin types V and VI) may also be at greater risk of severe long-term eye damage after SJS/TEN. In one study, nearly 78% of patients with darker phototypes experienced profound visual impairment compared to 50% of those with lighter skin². These patients were also more likely to develop swelling and scarring of the conjunctiva, the layer of tissue that lines the inner surface of the eyelids, and corneal ulceration, leading to vision loss. Researchers suggest that this may be linked to profibrotic wound-healing processes more common in darker skin².

Genetic and Immunologic Risk Factors

Genetic factors also play a role in SJS/TEN outcomes. Certain variants in patients’ genetics, such as HLA-B*31:01, occur more frequently in some people of Asian or African ancestry and increase susceptibility to SJS/TEN and other severe skin reactions that are caused by some  medications³. In addition, systemic conditions like HIV, which disproportionately impact communities of color raise the risk of SJS/TEN.

Underrepresentation in Medical Education

One of the most important challenges is the lack of representation of patients with darker phototypes (or darker skin colours) in medical education. A review of widely used textbooks and online resources found that fewer than 20% of SJS images depict patients with darker skin¹. This underrepresentation means many healthcare providers are not adequately trained to recognize how SJS presents in patients of color. As a result, diagnosis may be delayed, contributing to poorer outcomes.

Moving Forward

To improve care for patients with skin of color who develop SJS/TEN, we need to:

●      Expand medical training resources to include more images of skin conditions in darker tones.

●      Recognize that ocular complications may be more severe in these patients and require close follow-up.

●      Ensure equitable access to specialist care.

Bibliography

1. Diep D, Aluri B, Crane A, et al. Stevens-Johnson Syndrome in a Patient of Color: A Case Report and an Assessment of Diversity in Medical Education Resources. Cureus. 2022;14(2):e22245. doi:10.7759/cureus.22245

   
   

2. Thore D, Delcampe A, Ingen-Housz-Oro S, et al. Dark skin phototype is associated with more severe ocular complications of Stevens–Johnson syndrome and toxic epidermal necrolysis. Br J Dermatol. 2019;181(1):212–213. doi:10.1111/bjd.17627

   
   

3. Cheng L. Current Pharmacogenetic Perspective on Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis. Front Pharmacol. 2021 Apr 26;12:588063. doi: 10.3389/fphar.2021.588063. PMID: 33981213; PMCID: PMC8107822.