Aftercare

SJS/TEN aftercare can be a stressful process for many survivors and families. The recovery can be long and ongoing - and for many, will involve a lifetime of ongoing care and treatments.

Many survivors experience lasting effects involving scarring and pigment changes of the skin, chronic ocular (eye) complications, issues with the mouth, lungs and overall physical health. In conjunction with the ongoing physical needs of survivors, most will experience mental trauma and PTSD symptoms, mostly due to the severity of the illness, prolonged hospitalization, intense pain, isolation, and fear surrounding medications. Ongoing follow-up care may include wound and skin management, eye care for dryness or sensitivity, pain management, hydration, nutritional support, and monitoring for infections or scarring. Many will have to contend with hair loss (including eyelashes), nail loss and permanent vision changes.

Survivors need to avoid the medication that triggered the reaction, as future exposure can cause a more severe recurrence. Because SJS/TEN can have long-term complications, continued care from healthcare professionals such as dermatologists, ophthalmologists, and primary care providers is recommended to support healing and quality of life.

One of the main gaps noted by many survivors and their caregivers is the lack of information provided to them upon discharge from the hospital. Many find that the care team knows so little about SJS/TEN that they are unable to provide adequate aftercare instructions. This leaves the survivor feeling scared, uncertain and alone. Many are nervous to take any medications post-illness in fear that they will trigger another reaction. It is common for survivors to experience PTSD, including fear of medications, sleep disturbances, emotional distress, nightmares, anxiety and depression following their illness. Many survivors are also challenged with long-term physical changes, ongoing medical care and will carry an emotional impact of their experience. Often, mental health support, counselling, peer support groups and trauma-informed care can play a very important role in their recovery and help navigate life after SJS/TEN.