Our Community Blog My battle with Stevens-Johnson Syndrome August 2020 A severe allergic reaction My name is Marian Adejokun and I am 28 years old. I was diagnosed with a deadly, rare illness called Stevens-Johnson Syndrome (SJS) & Toxic Epidermal Necrolysis (TENS) back in January 2011. I remember as if it was yesterday… My eyes had been itching at college that day and after a quick chat with the doctor I was advised to use over the counter eye drops. Within half an hour of using them, blisters started to appear on my feet and spread across my entire body. My normally high pain threshold was experiencing something I had never felt before. This was a different kind of pain, as if I were burning from the inside out. My mom called an ambulance as my airways began to close and I was finding it hard to breathe. At this point, I could no longer stand as the blisters had completely taken over my feet. I’ve been through various medical ordeals in my life – including being born premature weighing only 1 pound – along with various surgeries. My initial thought was that this would be another challenge to overcome. Never in a million years did I think my entire skin would peel off and I’d end up in an induced coma due to a severe allergic reaction know as Stevens-Johnson Syndrome (SJS). Marian in hospital Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis At first, doctors thought I had swine flu and I spent time in an isolation ward. At this time, I was coughing up blood and bleeding from my eyes, still unaware it was an allergic reaction. Later I was moved to a hospital where a doctor recognised that I had SJS and put me into an induced coma due to the severe nature of the condition. My mom is a single mother to four girls, of which I’m the eldest. When I was in a coma my sisters didn’t see me but they, along with our pastor and friends prayed for me. They helped my mom through the tough times and told her that everything would be alright. I was in such a terrible state from the reaction that my own mother said I looked like Freddy Krueger with blisters, swollen lips and skin that was tearing off. Doctors told her I was unlikely to survive but my mom didn't listen to their negative reports, instead she had faith and prayed for my health, playing gospel music at my bedside. “Marian, you’ve been accepted to university, that’s your dream,” my mom said to me as I lay there, and I moved my toe in response. Pulling through against the odds Against all the odds I pulled through, with doctors hailing my recovery a miracle. Healing has been an ongoing process with a consultant dermatologist and an ophthalmologist helping me through. I must use special eye drops for the rest of my life to keep my eyes lubricated, and from time to time I experience blurry vision. Luckily, I didn’t need skin graft surgery and my tracheotomy scar healed well. At first, I avoided going out in public as I feared how people would perceive me. After a few months I began to feel more comfortable in my own skin and I shared my story to inspire others – turning my own negative experience into a positive one. This experience has boosted my confidence in a strange way. Now I teach primary school children, I’ve written two books and I’m an inspirational speaker. I would never have coped so well with this disease if it weren’t for my mom, sisters and faith. Although I live a normal life now, I am mindful and cautious when it comes to my health. Marian Adejokun Find Marian on Instagram here. Donate to skin disease research Visit our online forum By donating to skin disease research you are helping us to find treatments and cures for common conditions like eczema, acne and psoriasis, potential killers like melanoma skin cancer and rarer conditions like Stevens-Johnson Syndrome. Thank you.