STOP SJS

Section

Living with SJS/TEN

Practical guidance for the weeks after discharge and the years that follow.

The part nobody prepares you for

SJS/TEN is usually described as an acute illness — a few weeks, sometimes months, in a burn unit or intensive care. For many survivors that is the shortest part of it. What follows is a long tail of eye, skin, and mucosal problems managed across several specialties at once, a permanent change in how you approach medication, and often a psychological aftermath that nobody mentioned at discharge.

These pages are about that long tail: what to line up in the first weeks, what tends to show up over years, where to find other people who have been through it, and what written material is worth having.

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.