Living after
Lyell
Stories from survivors of
Stevens-Johnson Syndrome
& Toxic Epidermal Necrolysis
Hello! I made this blog in hopes of creating a community of survivors and families where we can share our stories and get support through recovery.
My name is Mariana, I was born in a fishermen’s city in Portugal, and I have loved to travel and live in several European countries after studying Fine Arts – Painting bachelor.
When I decided to go back to Portugal in 2019, my life took a turn – in June, at 28 years old, I got a severe allergic reaction to Diplexil, Lamotrigine (anticonvulsants), and Ibuprofen, by the name Toxic Epidermal Necrolysis (TEN) or Lyell Syndrome, also known as Stevens-Johnson Syndrome (SJS).
SJS and TEN are life-threatening skin reactions that are triggered by certain medications. The key difference between these two disorders is severity. TEN results in more skin loss than SJS. These skin reactions are typical due to a genetic mutation that causes the immune system to react abnormally to these medications and causes the destruction of cells in the skin and the mucous membranes. Symptoms of these conditions include flu-like symptoms, followed by painful blistering and peeling of the skin. This typically begins on the face, and chest and then they move to other portions of the body – similar to second-degree burn blisters, and detachment of the skin throughout the body.
Diagnosis is done through a skin biopsy and treatment includes the discontinuation of the medication, as well as fluid resuscitation, oxygen therapy, analgesics, and corticosteroids. The patient may need to be intubated and receive mechanical ventilation, and if possible, the patient should be admitted to a burn unit.
Needless to say, it was life-changing.
Throughout my recovery I researched and tried to get my hands on more information about what to expect from recovery, how to take care of and protect my skin, and, above all, finding a community where I could find people with a similar experience from whom I could ask for advice and support.
To my surprise, I found nothing – besides illegible scientific reports, there were no testimonials and no advice for the patients. That’s when I had the idea of creating a website and a community on Facebook and Instagram, where survivors and family members can come together, support each other, and find a safe space where they can feel understood, and welcomed during this traumatic experience.
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