Interview n° 18 - Le souvenir d'un syndrome de Lyell, pansée grâce à l'amour !
"Every wound leaves a scar,
Each scar tells a story.
A story that says: I survived"
Hello !
My name is Camille, I am 32 years old and I live near Avignon (South of France). I just left my job to fly to new horizons. But life decided a little differently.
In October 2017 I met the Lyell’s Syndrome (TEN : toxic epidermal necrolysis). After 3 weeks of hospitalization I had to start a new life. It may seem short for you, but I’ve lost my identity, my story, my body and my youth at the hospital.
But here I am!! Today I’m telling you my story, and I’m sharing all the tips that I needed. I am re-inventing my life, with you. Welcome to AFTER MY LYELL !
"You do not know how strong you are until the day when being strong is the only solution "- Bob Marley
Why this website ?
The Lyell’s and Steven’s Johnson syndromes (TEN) are very rare and serious diseases. I did not know this syndrome at all before having it, it is estimated that per year, 1 in 1 million has a SSJ or a Lyell.
This is not a legend: the disease makes you feel alone, and abandoned. I was very supported during this episode of my life, perhaps, I felt alone, isolated, and misunderstood. I searched for answers to the billions of questions I asked myself on the internet. Surprise! I found only alarming answers .. I could not project myself, to think that it would be ok, or to find even a small ray of hope. Nothing.
So here we are ! Today I create my website to tell the story of my Lyell, tell everything I need to say, and above all: to provide tips and tricks to live sweetly after this disease!
How ?
Through the pages of my blog, I’m going to give you a lot of tips, tricks, tools that I found indispensable or that I missed during during and after my TEN.
By the way: I'm not here to give you miracle cures! You will not find on my blog 3 tips to rebuild in two weeks after a trauma! I am not a doctor or life coach! I am just a young woman who has gone through something very hard, and rare and who wants to bring a lot of tips, advice and positive vibes for future patients and their loved ones <3
I know that not all SSJ / Lyell (TEN) are not the same. I know that we are not all equal in front of the damages that these syndromes leave on us, but I hope to bring some positive vibes and a ray light to some of you .
Never Give Up.
XOXO
Camille