My name is Marian Adejokun. I was diagnosed with a deadly rare illness known as Stevens Johnson syndrome (SJS) and Toxic Epidermal Necrolysis (TENS) back in January 2011.
I remember as if it was yesterday … I was at college and told my teacher my eyes were itching me. From there I went home and informed my mum and she told me to call the doctor’s office, and I was told by the doctor to buy over the counter eye drops (Optrex). My mum administered the eye drops into my eyes and within 30 minutes blisters started coming up under my feet and my whole body (pouring water on myself was excruciatingly painful). I normally have a high threshold for pain, but this was a different kind of pain; as if I was burning from inside out. The last thing that did it for me was when my airways started closing up and I was finding it hard to breathe – that’s when I told my mum to call an ambulance. At this point in time, I was unable to stand on my feet as the blisters had taken over the whole palms of my feet.
My initial thought was oh this is just another ordeal and I will overcome it, as I was born four months early and weighed one pound, faced various medical surgeries and ordeals and have come through them all.
Stevens Johnson syndrome
Never, in a million years did I think my whole skin would peel off and I’d end up in an induced coma due to this severe allergy reaction known as SJS. I was in hospital from January to March. Initially, at the first hospital I went to (Croydon University hospital) they said I had swine flu and put me in isolation. I was throwing up thick blood and had blood gushing out of my eyes due to the allergy I didn’t know I had at the time. Later, I was moved to The Royal London Hospital thanks to one doctor who was aware of what was happening to me. I was informed by my mum that I was put in an induced coma due to the severe nature of the condition. My mum (Aderemi Adejokun) is a single mother of four girls and when I was in coma my younger sisters were not able to see me. However, we had Pastors and friends who were constantly praying and telling my mum that everything will be alright.
Recovering from SJS has been an ongoing process as I’ve been under a dermatology specialist at The Royal London Hospital and also an ophthalmologist. Having to use eye drops for the rest of my life to keep my eyes lubricated is crucial. I am so blessed that when I came out of the ordeal I did not need to have skin grafts done or eye surgeries. I’d had a tracheotomy and it had closed up beautifully by itself. My skin has healed pretty well but from time to time I do get blurry vision.
I remember not wanting to go out in public as I feared how people would perceive me.
After a few months went by I felt more and more comfortable in my own skin and started talking about my story to inspire others and turning a negative situation into a positive one. On the bright side, I have new skin, finger nails, toe nails and hair like a baby! Now I share my story to inspire others and give them hope through their challenges.
I have started a campaign titled: ‘My Scars Tell A Story Photography Campaign’.