By Alyce Collins
THIS STUNNING woman contracted toxic epidermal necrolysis which burned away NINETY PER CENT of her skin, including her genitals, and left her with life changing scars after an allergic reaction to penicillin.
Former personal assistant, Camille Lagier (29) from Avignon, France, is learning to accept her body after she became allergic to the penicillin she was taking, and her body began burning itself from the outside.
Camille had tonsillitis and in September 2017 was prescribed penicillin to recover. Weeks later, on September 29, Camille noticed her eyes becoming increasingly itchy and red marks appeared on her back.
Following five days of symptoms, Camille’s parents took her to the closest hospital as they began to get worried about her worsening condition. However, once there, doctors deemed her condition to be more serious and she was transported to an intensive care unit at Marseille Hospital, which had a specialist burns unit.
Almost immediately doctors recognised Camille’s condition as toxic epidermal necrolysis (TEN) and a biopsy was carried out to confirm the inevitable.
TEN is a severe skin reaction to medication which results in the skin blistering and peeling off as the skin is burned away. Camille was covered entirely in bandages, including her face, for over a week, despite being awake the entire time.
“The first symptoms were itchy eyes and some spots on my back which got worse by the hour,” said Camille.
“The drug which gave me TEN was penicillin which I’d started taking during the second week of September because I had tonsillitis. I’d already taken penicillin since I was a little girl, but an allergy can arise at any time.
“My parents took me to the emergency department of Avignon hospital, but the doctors decided to transport me to an intensive care unit, in the burns unit of Marseille. We didn’t understand what had happened.
“They talked about TEN very quickly, but we didn’t know what it was. It was horrible because we didn’t know that this kind of disease could exist.
“Nobody told me that my days could have been limited and no one explained what this disease could do to my body, my eyes or my organs. There is no medication to recover from TEN, just morphine to calm the terrible pain.
“I was covered in bandages because 90 per cent of my skin was covered in second degree burns and my eyes were delicately cared for because patients can go blind after TEN.
“Not only my skin burned, but also my mouth, tongue, genitals, and it has spread to my trachea. I could not talk for a few days. I had a urinary catheter for 10 days and after leaving hospital I saw my gynaecologist who said my genitals were okay on the inside but very sensitive. I had to take care of it for two months and now everything is fine.
“My eyes were also affected so I had to have injections during the hospitalisation and a lot of drops put in.
“I spent eight days with bandages all over my body and all over my face. I was awake, and every minute was torture. After eight days, they took the bandages off my face and two days later took them off my hands.
“Bandages were changed every two days to clean the body and disinfect my skin. On the sixteenth day they took off the bandages from the rest of my body.”
There is no known treatment for TEN apart from stopping whatever medication is causing it and Camille was monitored by staff.
Before her TEN diagnosis Camille wasn’t a confident person, but her experience and coming to terms with her body being covered in scars has taught her to be thankful for her imperfections and for her life.
Despite spending three difficult weeks in hospital, Camille is now embracing the scars her body has been left with as she hopes to inspire other sufferers and to increase awareness for a condition about which very little is known.
“During the first days I felt so alone and anxious. I didn’t know if I would be alive the next morning and I couldn’t understand why this horrible thing had happened to me,” said Camille.
“I never felt confident before and while I was in the hospital I asked myself why I’d spent 28-years hating myself when I was beautiful and kind. I thought I’d lost all of that.
“I wondered what I was supposed to do after a trauma like that, but I realised that I had a second chance to live my life and to accept myself. This terrible experience showed me that we can’t predict everything in our lives.
“The TEN did have an impact on my sex life, but it was more psychological. My boyfriend, Jean-Baptiste, was with me through the entire hospitalisation and he was so kind.
“When I left the hospital, I wanted to have my old life back, so I forced myself to play like everything was okay, but it wasn’t. I wanted to find our intimacy again. I put a lot of pressure on myself to be ready to have sex again and the first time was a disaster. I cried because it was so painful.
“Restarting our sex life was through love, care, tenderness and patience. This experience has really made our love story grow.
“Now I love myself and my body with all of its imperfections and scars. Every day I have the chance to see a sunset or to drink a cup of tea. Happiness isn’t the smile I wear when I’m around others, it’s the smile I wear when I’m alone, in front of my own reflection.
“I’ll never have normal skin like before and I still have lots of scars, but they remind me every day that I won. They’re no longer something I hate, I’m proud now.
“I gave sense to everything by writing my own blog to help others and show the world that even after a journey in hell, life can be beautiful.
“When I left the hospital, I did some research and I couldn’t find anything on the internet about TEN. No tips or advice on how to recover from the nightmare.
“Patients need hope more than anything, and I made a promise to myself to never let someone feel as sad and desperate as I did following my trauma. Of course, it was the worst thing to happen to me, but the best lesson that life could teach me.
“Keep a place in your heart for hope. You have to have hope that one day the trauma will be less painful and that one day you will laugh again. It’s very long but it’s worth it, more than you know.”
You can see more about Camille’s recovery and read her tips at @aftermylyell and aftermylyell.com.