My Story
First things first, what is SJS/TEN?
Toxic Epidermal Necrolysis (TEN), Stevens-Johnson Syndrome (SJS) – or Lyell Syndrome -, are a rare, severe, and deadly allergic reaction to medications that cause widespread erythema and necrosis to more than 60% of the skin – meaning it causes second-degree burns in the epidermis, and the skin to peel off. It also affects the mucous membranes – eyes, mouth, genitals – but also vital organs. It may result in sepsis and death.
Content warning: This page contains graphic photographs of the patient in the most acute stage of the disease.
June 1 2019 One day in Lisbon, one month after taking a prescribed medication, I started having a fever, for which I took Benuron for 3 days. As it didn’t lower I took Ibuprofen to which I suffered an allergic reaction.
After those 2 days, some red spots started to appear on my face, and later on my chest, arms and back. That night my throat started to swallow and close so I and my cousin ran to the hospital where I was diagnosed with what they thought was Stevens-Johnson Syndrome, which affects more than 20% of the skin and was sent to the intensive care unit.
As time went on burn blisters appeared all over my skin and that’s where they diagnosed me with Toxic Epidermal Necrolysis and was sent to the burn unit on June 6.
As time went on burn blisters appeared all over my skin and that’s when they diagnosed me with Toxic Epidermal Necrolysis and was sent to the burn unit on June 6.
I was intubated to breathe and to feed and put into a coma for 2 weeks where I had the most bizarre dreams and nightmares. First I had nightmares of being left alone in the middle of the street, without being able to move straight or talk, alongside homeless and drug addicts. I heard my mother’s voice talking to me in the Hospital telling me to come back, so I did, I got up using all the strength I had left, asked for a ride and went back to the hospital. This happened 3 times.
Another dream I had was about a house that was filled with carpets, on the floor, and walls, covering the windows, doors, and ceiling. They were all moving, dancing slowly and bizarrely, like a hallucination.
I finally woke up, not knowing what had happened to me. The last thing I remembered was having a small allergic reaction and now I’m surrounded by 4 or 5 nurses giving me a bath?! I lift my arms and saw them all scared and got scared. I couldn’t talk so I would gesticulate or write the letters with my finger on the blanket to get my answers.
At first, I didn’t want to ask what was going on, I guess I was afraid of what the answer might be. The first thing I asked for was at 4 am and it was to listen to music.
My vision was a bit blurred because it could get damaged so the nurses were constantly hydrating my eyes, and I couldn’t tell if it was day or night, what date and time were and so minutes turned into hours, hours turned into days.
I spent 4 more weeks hospitalized after the coma because my skin needed to be reborn, my immune system needed to get stronger, I needed to do physiotherapy to learn how to walk again and I had sepsis and a blood hospital bacteria while I was in there for which I took numerous antibacterials.
Slowly I learned how to bathe, go to the bathroom, get dressed, and then chew and eat solids. I had to learn the basics all over again and learn some patience while you’re at it.
The highest points of my days were when I was desintubated – I could breathe again!! – my friends and family – only one visitor per day were allowed, as I was in an isolated room -, learning to walk and doing some exercise and stretching the best way I could.
My mind was divided between the urge to leave the hospital and see Nature and the outside and the fear of what was awaiting me from the recovery.
I left the hospital on 6th of July. I just felt blessed for surviving, only later did I understand the severity of the situation, and for having passed by only 1 month because for a moment there I wondered if many months had passed. Were we still in 2019 or were we already in 2020?
I got back home in an ambulance and from then on my life took a 360-degree turn. I could only go outside in the early mornings and late afternoons. I could barely go up the stairs and I could not even think of running – I used to run in the garden next to my place. Restless, as I had quit my job just before I got hospitalized, I started painting again on some projects, going to the gym at a really slow pace, hydrating a LOT – both water and body/face cream – and eating well. That was all I thought about for the first 2 to 3 months of recovery.
It was GREAT to be able to do what I wanted, well some things, when I wanted in the comfort of my place
AFTER EFFECTS
– Lost ALL my nails and a lot of hair
– 2nd degree burn scars all over my body
– Lost 10Kg/22pounds
– Cannot get any sunlight for 1-2 years
NEW RULES
– Going outside only in early morning and late afternoons with sunscreen 50+ or 100+, hat on and fully covered (it was Summer time, so you could imagine how hard this was)
– Moisturizing several times a day with pharmacy creams prescribed by the dermatologist
– Drinking 2L of water per day
– Exercising several times per week to strengthen my body
– Eating a lot and more healthy to gain back my weight (60Kg/132
During the first months of recovery I searched for information about this illness and initially only found medical targeted articles. Only after some hours of searching I found a couple of youtube videos and Instagram pages from ex-patients talking about their experience.
It was heartwarming to hear these people talking about it, made me feel less alone, and to hear and read about all the side effects that I myself would have to go through. It really eased my anxiety and prepared me to overcome whatever I had in front of me coming my way.
I found @haley_lasvegas video on YouTube and Camille’s Instagram page @aftermylyell where they post their story with TEN, other survivors’ stories, and their healing process. It gave me strength, less feeling of isolation during the recovery process, and more confidence to go through this experience.
I only used products prescribed by the dermatologist.
Makeup
I only started using some makeup on the 3rd month of recovery and bought a small pack of makeup products from the pharmacy to start with – lipstick, a bronzer with blush and a powder foundation.
Skincare and Hygiene
Immediately after I got out of the Hospital I had a dermatology appointment where I was advised to use pharmacy products. Here are the ones I have been using for the first 6 months.
1 – Castor oil for hair growth
2 – Avene face cleansing foam
3 – Bioderma body shower gel
4 – Avene shampoo
5 – ATL body moisturizer
6 – SVR face moisturizer
7 – Heliocare 50+ SPF body sunscreen
8 – ISDIN 100+ SPF face sunscreen
9 – Face towel
