Living with SJS/TEN
Education Materials
Written material you can download, print, and hand to someone — including clinicians who have not seen SJS/TEN before.
Patient guide
The SJS/TEN Patient Guide
A 14-page booklet written for survivors and their families: what SJS/TEN is, what to expect during and after hospitalization, what each specialty looks after — skin, eyes, gynecology, urology, pulmonology, mental health — and questions to bring to your own doctors. It has space to write their answers down.
Led by Dr. Eden Lake and Djoni Elkady, Loyola University Medical Center, with contributions from 7 specialists including Dr. Charles S. Bouchard. Shared under CC BY-NC-ND 4.0. Reproduced here unaltered, with thanks.
What is in the guide
Fourteen pages, organised by specialty. After an introduction and a page of facts about what SJS and TEN are and how they differ, it covers management and follow-up, then works through each specialty in turn — skin, gynecology, ophthalmology, psychiatry and psychology, pulmonology, urology — before a set of frequently asked questions, a page of support groups, and blank pages for writing down what your own doctors tell you.
It is written for survivors and families rather than clinicians, and it is equally useful in the other direction: handing it to a clinician who has not managed SJS/TEN before is a reasonable thing to do.
Credit
The guide was led by Dr. Eden Lake and Djoni Elkady, Loyola University Medical Center, with contributions from Alexandra Kiszluk, BS, Anjay Khandelwal, MD, Charles S. Bouchard, MD, Esther Fuchs, MD, Taylor Starnes, MD, Arthur P. Sanford, MD, Elizabeth Simmons, PsyD. It is published under CC BY-NC-ND 4.0 and is reproduced here unaltered. We are grateful to the Loyola team for making it freely available.
Other reliable material
For patients and families
- MedlinePlus — Stevens-Johnson syndrome / toxic epidermal necrolysis ↗
A short, plain-language overview from the US National Library of Medicine. A good first thing to send a relative who wants to understand the diagnosis.
- NORD — Stevens-Johnson syndrome report ↗
A fuller patient-facing account from the National Organization for Rare Disorders, including where the condition sits among related reactions.
- SJS Foundation ↗
Survivor-led resources and the largest US patient community for SJS/TEN.
For clinicians
- Acute and chronic ocular manifestations of SJS/TEN ↗
Open-access review of ocular involvement across both phases, with management recommendations.
- CPIC — pharmacogenetic prescribing guidelines ↗
Peer-reviewed guidance on HLA testing before carbamazepine, allopurinol, abacavir and others. See our page on genetic testing for context.
- Genetic Testing
Which gene-drug pairings have guidelines behind them, and what a result does and does not mean.