Steven Johnson Syndrome - A Survivor's Story

Have you ever looked death into the eyes? Ever felt the life slip out of your hands? Ever heard your loved ones weeping all around you as if it was your funeral? I have been through all this 13 years back. If you are reading this post, I would first insist you to go to Google images and search 'Toxic Epidermal Necrolysis' and Steven Johnson Syndrome', see how it looks like and then read further. Also, it's a long story, so please bear with me...

(Disclaimer: This article is about my ordeal with TEN/SJS. It may lack medical technicalities.)

It was the summer of 1998, and I was just back from  my first visit to Chennai after undergoing a nerve-related treatment at the Apollo Hospitals. The doctor who was treating me prescribed me a medicine, known as Tegretol (manufactured by Novartis). We returned to Silchar (Assam) on March 28th. I lazed around for 3 days, as the classes were about to start from the 1st of April. On the night of 30th March, the first symptoms showed up. It looked like measles to me, and I complained to my parents that I was getting weird eruptions on the skin and that it itches. Never in my wildest dreams would I have imagined that I was so close to the end of my existence. My Dad consulted with our family physician (Dr. Ajit Bhattacharjee), who is a Dermatologist and upon his suggestion that it might be a drug reaction, he called up the doctor at Apollo to consult with him. Instead of asking me to stop the medication, he denied that the reaction had anything to do with Tegretol and asked me to continue taking the medicine.

31st March morning, I started to lose some sensations as if I was going numb. By afternoon the eruptions looked like those of chicken pox. I got ulcers in the mouth and also, started dripping saliva from the mouth (like you do after being on anaesthesia on a dentist's chair), which was pretty numb by then. When my dad came home from office and saw my condition he decided to take me to another doctor - Dr. Manabendra Deb, who had treated a similar case before. The doctor checked me and asked him to get me admitted in the hospital immediately. My first reaction was - why the hell am I being admitted to a hospital with such utmost urgency because of skin rashes?!

It was then when the Doctor explained to me that I have symptoms of TEN (Toxic Epidermal Necrolysis), a severe form of SJS (Steven Johnson Syndrome), which is a life-threatening condition affecting the skin and subsequently the eyes, blood vessels and multiple organs. If not death, outcomes such as organ damage and/or blindness is common in this case. I was immediately put on saline and protein drip. Blood and all other possible samples were taken. And then came the life saving steroids.

1st April :  I know how lame this sounds but initially I very excited as family and friends were dropping in to see me.I was just a child and the worst was yet to come.

It was only towards the end of the day when someone switched on the lights and I shrieked, that everyone realized - I have developed photophobia. My windows were then covered with green curtains and only one dim light was allowed to be lit in the room. My condition started to worsen during the night, with more life saving drug being pushed in through the saline syringe at regular intervals. For some strange reason, I was not letting anyone come near me, except for one particular nurse and my father; not even my Mom.

2nd April 1998: It is the worst day of my life till date. Around 2am while everyone was sound asleep, I suddenly sprang up on the bed from a sleeping to a sitting position instinctively and  started vomiting blood. There was blood everywhere, on my hands (as I cupped them in front of my mouth to stop it), then on the bedsheets and on the floor. It was like I was living in a nightmare! Till date, I remember that moment vividly as if it was just yesterday. The resident doctor was called immediately. It was at that moment when the doctor announced, there was only 0.1% chance that they could save me.

From the next day onwards, I was prohibited from looking into any mirror. With blood red eyes and lesions on the skin, I would have easily got a role in the 'then very famous' Zee Horror Show. In fact, I even overheard a family friend of mine comment that I looked like one of those ghosts.

I was in the hospital for two entire weeks and it was only one particular day when a drop of tear rolled out of my eyes when my uncle and aunt  came to pay me a visit before shifting to Delhi. We were a joint family until then and he had just got his transfer orders during those days. At that moment I felt I was hearing their voice for the last time. Even seeing them was out of question as I had bandages over my eyes. I could only hear their sobs and then I cried - for the first and the last time during those days.

Over the next few days, people kept pouring over. I heard them weep, as if all hopes were lost. My then best friend Puja couldn't even enter the hospital chamber. Someone told me she was standing at the entrance of the room and crying. Even the Principal of my school paid me a visit one of those days. I learnt something about human nature in those days - people give up on hope way too fast and I don't blame them - I looked  like the definition of lost cause!

Over time, my lips got sealed and I couldn't even speak. If I needed something, I used my fingers to spell it on someone's hands. I had syringe punctures all over me. An otherwise tolerant patient through all these, I protested vehemently only once - through gestures - when the doctors were instructing the nurse to push the drip syringe through my legs, as both my hands had swollen up. Thankfully they respected that one wish, and continued using my hands interchangeably.

I was being treated by Dr. Prabhati Dhar Purkayastha (ENT), Dr. Sandeep Dhar (Ophthalmology) and Dr. Bhaskar Gupta (Dermatologist), along with Dr. Manabendra Deb. I also remember that two doctors from Apollo Hospitals (Chennai) had come down to Silchar to pay me a 'visit', probably in an attempt to do some damage (read reputation) control.

I don't remember few days in between as I passed in and out of consciousness.

After 7-10 days my conditions started to improve a bit. Slowly I got rid off the photophobic condition. I felt I was gifted with new eyes. Everything was so colorful all around. The world (or rather the hospital room) was beautiful!

Then slowly I was able to speak again. I blabbered so much like I was speaking after decades. 

One fine day (after almost 10 days of being admitted), the nurse asked me to step down from my bed and take a walk. I was super excited, but as soon as I tried to take the first step, I stumbled. My legs had gone totally numb. The nurse caught me and slowly taught me to walk - again. With each step, the numbness disappeared.

I felt like I was in heaven back on earth. I even shed nails and new nails grew in their place.

I was discharged on 15th April. I was going home finally! My nurse came along with me and stayed with us for almost another month.

The first thing I did after stepping inside my home was to run to the nearest mirror. I still looked pale and horrible, and could only imagine how I would have looked during the first one week. I was prohibited from much exposure to sunlight for almost  an entire year.

My parents celebrated my birthday with much grandeur that year, as if it was the first birthday of a new born.  They told me it was my second life.


Till today I regard all my doctors as Gods - the ones you can see with your eyes. I owe my life to them, after all. Like some miracle, few minor health problems I had till then got cured after that, as if it was actually a new life, a blessing in disguise.

I did learn a few lessons from that incident-

1. First and foremost, one should never lose hope. The reason I never feel disheartened whatever the situation is  because I feel there is always some hope left.
2. Face every situation bravely and fight till the end. Death is peaceful and inevitable for all that is born, but life is way too beautiful to let go without a swashbuckling fight :)
3. There is a Supreme Being/Energy in this world, that creates miracles. I don't believe in traditional forms of "God" per se. This formless thing I am talking about is present all around us and at the same time, quite ironically, can come to us in different forms. For me, it came to me as my Doctors and saved my life. To some extent, I could feel it in my parents too, who never gave up and fought alongside.
4. Last but not the least, there is an information leaflet provided with every medicine. ALWAYS read it CAREFULLY, before taking the medicine, especially the side-effects section.

For more information on Steven Johnson Syndrome, refer here (Wikipedia).