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Patient voice

My scars tell a story

Stevens Johnson syndrome (SJS) & toxic epidermal necrolysis (TENS).

My name is Marian Adejokun, and I am 30 years old. I was diagnosed unexpectedly with a rare illness known as Stevens Johnson syndrome (SJS) & toxic epidermal necrolysis (TENS) in January 2011.

I remember, as if it was yesterday… I was at college and told my teacher my eyes were itching. From there I went home and informed my mom who told me to call the doctor’s office. The doctor told me to buy over the counter eyes drops which I promptly did. My mom administered the eye drops and within 30 minutes, blisters started coming up under my feet followed by my whole body (it was excruciatingly painful).

Diagnosis of Stevens Johnson syndrome

I normally have a high threshold for pain, but this was a different kind of pain; as if I was burning from inside out. My airways started closing up and I was finding it hard to breathe. I told my mom to call the ambulance. At this point, I was unable to stand due to the blisters across the entire sole of my feet. My initial thought was: oh this is just another ordeal, and I will overcome it… I was born four months early and weighed just one pound; faced various medical surgeries and ordeals and have come through them all. I assumed this would be the same.

“Never, in a million years did I think my entire skin would peel off or that I would end up in an induced coma.  But this was a severe allergic reaction known as SJS (although we didn’t know that at this time), and that is exactly what happened. “

I was in hospital from January to March. Initially when I was admitted to Croydon University hospital they suspected I had swine flu and put me in an isolation ward. I was throwing up thick blood with blood gushing out my eyes.

Next, I was moved to The Royal London Hospital where thankfully a doctor joined the dots and realised what was happening to me. I later learned from my mom that I was put into an induced coma due to the severity of my reaction and my condition.

A difficult recovery

My mom is a single mother of four girls, me being the oldest, so while in the coma mom felt it better that my younger siblings did not see me. However, we had pastors and friends who were constantly praying and encouraging my mom that everything would be alright.

According to my mom, I was in such a terrible state I “looked like Freddy Krueger” from the horror film Nightmare on Elm Street.

Mom added, “I hate to say that, but there were so many blisters – her skin was just tearing off and her lips were very swollen. As she laid on the bed, unable to talk, I said “Marian, you’ve just made it to university, that’s your dream” and she moved her toe.”

Even specialist skin experts told my mom that I was unlikely to survive. But my mom knew different.

As mom explained, “you defied the odds and pulled through—doctors hailing your recovery a ‘miracle”.

Recovering from SJS has been an ongoing process.  I remain under a dermatology specialist at The Royal London Hospital and an ophthalmologist. Due to the damage to my eyes, I need to use eye drops for the rest of my life to keep my eyes lubricated—this is crucial.

I am so blessed that when I came out of the ordeal, I did not need to have skin graft or eye surgery, albeit I do live with blurry vision from time-to-time. Even my tracheotomy healed beautifully by itself in time. My skin, which had been a mess of blisters also has healed pretty well.  

Facing the future

I remember initially not wanting to go out in public as I feared how people would perceive me. But as the months went by I felt more and more comfortable in my own skin and started talking about my story to inspire others—turning a negative situation into a positive one. On the bright side, I now have new skin, fingernails, toe nails and hair like a baby!!

I definitely believe my experience has made me more confident communicating in front of others (as I am a naturally shy person) and I have learnt to except what I went through and am sharing it with others so I can in turn help and inspire them.

Number one in all this was my faith in Jesus and prayer; my mom (Aderemi Adejokun) and my sisters. I have no idea what I would do without them. I’m so blessed to have them in my life, along with my close friends.

I remain thankful, and ever mindful and cautious when it comes to my health…

Contact Marian

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