" I was burning, there is no other term, I was in terrible pain, the pain was so bad that I finally broke down, I wanted the pain to stop, everything stopped, I wanted to put an end to it . "

This distress is that of Camille. At only 28 years old, the young woman sees her life switch because of Lyell syndrome. A rare disease that we do not talk about, and that only those who have been confronted from near or far know.

Lyell's syndrome, a condition that can be life-threatening

Toxic epidermal necrolysis , commonly known as "Lyell syndrome" is a disease that ravages its victims and sometimes carries them off. In France, there are about 1 in 1 million cases , with a mortality rate of around 30%.

Provoked exclusively by drug allergy , this pathology is manifested by a toxidermy, that is to say the detachment and the destruction of the skin and mucous membranes . Eyes, mouth and genitals are usually not spared. In the same way as the vital organs which, themselves, are exposed to the danger of lesions.

We speak of "Stevens-Johnson syndrome" when the body surface area is less than 30%. Beyond this threshold, the risk of death soars, it is a Lyell.

"The severity of the symptoms is very random, it varies considerably from one patient to another, some do not recover, while others get back on their feet in a few months. to stop the process, we rely on luck, "says Camille.

The day everything changed

A companion she loves, a stable job she leaves without regret to take on new challenges ... We are Friday, September 29, 2017 and everything goes for the best in the life of Camille, still very far from imagining what who is waiting for him.

The next night, she is awakened by violent itching. Then, lesions in the mouth alert him and make him understand that something is wrong.

The first doctor she consults prescribes something to calm a mild allergic reaction . But his condition is getting worse. As soon as he is notified, the family doctor diagnoses a case of chicken pox.

Tuesday, October 3, while no treatment is effective, Camille cracks. Overwhelmed by pain and panic, she calls the UAS who refuses to travel for "a young woman with chickenpox"; it is his parents who decide to take him to the hospital.

"I was initially supported by the dermatological department, but by noting the extent of the damage, the specialists transferred me urgently to the intensive care unit for burn victims," ​​she says. "That's where I was told what was happening to me: Stevens-Johnson Syndrome, or in the worst case a Lyell, caused by penicillin allergy ."

"I became a human plague"

She can not open her eyes as the burning sensation is strong, she is feverish, leached, lost ... "We may have to shave your head tomorrow morning," said a member of the medical staff.

The blows of club follow each other. Finally, she will not be shaved. Lyell's syndrome will be home to 90% of her body surface, giving her an ounce of relief from the top of her skull.

"My pimples covered my whole body, they made bubbles and they melted, my skin was peeled off, it gave way to raw flesh, my flesh, I had no more skin or dermis, I became a human plague. "

More than three weeks of hospitalization

To relieve and heal her skin, Camille was "mummified" for a week: "I was blindfolded from head to toe."

All in all, she will have spent more than three weeks in the hospital. Long hours punctuated between radios, exams, catheter, probe, bandages ... A nightmarish path along which it loses 6 kilos. "I did not eat much, because of the lesions in my mouth, even the water had a taste of acid".

Beyond the weight, it is the very identity of Camille who flies in shine. She even refuses to look at herself: "I asked that we hide the mirror in the bathroom, it was unbearable to see me in this state, I did not know who I was."

The back of Camille / AfterMyLyell

"We discover forces that we did not imagine"

It is by clinging to small victories that Camille has regained the desire to live, and the courage to fight. "When I recovered a semblance of motor skills and autonomy, I knew that I would be able to pass this test."

At the end of October, Camille can finally go home and resume a "normal" life. But everything does not solve by crossing the glass doors of the hospital, the outside also has its share of dangers. For endless weeks, she struggles to come to terms with her environment. "I was afraid of everything, the sun, the eyes of others, to die, my anxieties had no limit."

The investment of her family as well as several sessions of kinesiology managed to appease the weakened young woman. So much so that she now confides without difficulty on her life before Lyell.

With naturalness and even a certain serenity, she describes "the old woman" as if it were a very different person: "I was a light person, I liked to take care of myself, to pamper myself I have always had a big lack of self-confidence but that has never stopped me from living my life as I understood it. "

Lucid, Camille says she quickly realized that she should mourn a part of herself. A constant fight that seems to be coming to an end, just 4 months after his hospitalization. "I lost my identity, the one I stayed at the hospital, but now I do not regret anything, I'm moving forward."

To reclaim his body and his femininity

Ravager, the Lyell syndrome did not however prevail in Camille. On the contrary, it has only improved the quality of time and care that it devotes itself to. Her beauty routine is today divided between mandatory gestures to heal the damage of the ruthless Lyell, but also and especially new habits make-up, "for the pleasure of feeling beautiful."

"I pay a lot more attention to what I give to my body, both inside and out, my diet has changed a lot, I'm talking about running and I'm dealing with the after-effects I have nails, eyes, and everywhere else, "adds the one who defines herself as a" survivor ".

A pathology so corrosive leaves physical traces that Camille accepts with a resilience tinged with humor: "I do not know if the spots that I have on the body will leave one day.But too bad, it is like that, that does not I have more problem to look like a Dalmatian. "

AfterMyLyell, a blog to "make sense of what does not"

During her darkest hours, Camille sought solace in the testimonies of former patients. Soon, it ran into a great void, scattered here and there with few disastrous and even demoralizing feedbacks.

"We do not have the right to leave those who suffer to be delivered to themselves with questions in their heads," she says, before adding: "I had to find a way to do it." to express, for me, for others who will live the same thing, to tell them that we can get up, that life does not always stop after a Lyell. "

Determined to share what happens to her rather than isolate herself, Camille launches AfterMyLyell a blog in her image on a background of pastel pink and polka dot background. "I wanted to give meaning to what does not." An intimate interface in which the photos "shock" of his ordeal mingle with a flood of inspiring, positive proverbs. She subtly puts into perspective the story of her crisis and some selfies on which she appears all smiles, dressed, more alive than ever.

Line after line, this survivor not like the others is told in practical and above all, informative articles. All subjects spend there: the shower, hobbies, phrases to avoid ... A life-saving outlet that she intends to evolve by giving more and more speech to other victims.

In a last confession, Camille blows: "Today I feel beautiful, it's sad to have to go through so many trials to succeed in loving each other." Before concluding, optimistic: "The disease takes us a lot, but I assure you that life makes us everything and more."