Living after
Lyell
Histórias de sobreviventes com
Síndrome de Stevens-Johnson
& Necrólise Epidérmica Tóxica
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 29 years old, I got a severe allergic reaction to antidepressants and anti-inflammatory pills (Diplexil, Lamotrigine, and Ibuprofen), by the name Toxic Epidermal Necrolysis (TEN), also known as Stevens-Johnson Syndrome (SJS), or Lyell Syndrome.
TEN is a potentially life-threatening dermatologic condition characterized by widespread erythema, necrosis, and bullous detachment of the epidermis (similar to second-degree burn blisters, and detachment of the skin throughout the body), and mucous membranes (eyes, mouth, genitals), resulting in exfoliation and possible sepsis and/or death.
Needless to say, it was life-changing.
Throughout my recovery I researched and tried to get my hands on more information about the recovery process – what to expect, how to take care of and protect my skin, and, above all else, 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 medical reports, there were no testimonials and no advice for the recovery process. 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 stop feeling alone, helpless and misunderstood during this traumatic experience.