Sunday, February 13, 2011

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 '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 SJS. It may lack medical technicalities.)

It was the summer of 1998. That was my first time visit to Chennai. My final exams had just got over and I had come with my parents for some treatments at the Apollo Hospitals. The doctor who was treating me prescribed me a medicine, known as Tegretol (manufactured by Novartis). We returned to Silchar on March 28th. I lazed around for 3 days, as the classes were about to start from the 1st of April. It was the night of 30th March when the first symptoms showed up. It looked like measles to me. I complained to my parents that I was getting weird eruptions on the skin and that it itches. Never in my 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 has nothing 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 to drop saliva from the mouth, which was pretty numb by then. When my dad came from his 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 my Dad to get me admitted in the hospital immediately. My first reaction was why the hell am I being admitted to a hospital because of just skin problems??

It was then when the Doc explained to me that I have symptoms of 'Steven Johnson Syndrome' (SJS), which is a life-threatening condition affecting the skin and subsequently the eyes, blood vessels and other 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 tests were done. And then came the life saving steroids.

1st April : You would call me crazy if I say I was very excited as family and friends were dropping in to see me. The worst was yet to come. It was only towards the end of the day when someone switched on the light 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. I was not letting anyone come near me, except one particular nurse and my Dad; not even my Mom.

2nd April : The worst day of my entire life till date. It was around 2am, when everyone was sleeping, that I suddenly sprang up from the bed and started vomiting blood. There was blood everywhere, in my hands, on the bedsheets and on the floor. It was like I was living in a nightmare.... Till date, I remember that moment as vividly as it was just yesterday. The resident doctor was called immediately. It was at that moment when the doctor said 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 heard 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 dropped out of my eyes when my uncle and aunt (Tauji and Taiji) were shifting to Delhi and came to pay me a visit before leaving. We were a joint family till then and he had just got his transfer orders during those days. It was at that moment that I felt, I was hearing their voice for the last time in my life. I couldn't even see them as I had bandage over my eyes. I could only hear my Taiji's sobs and then I cried, for the first and the last time during those days.

Over the days people kept coming over. I heard them cry, as if all hopes were lost. My 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 day. Over the 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.

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'.

I don't remember few days in between as I did not have any consciousness. After almost a week my conditions started to improve a bit. Slowly I got rid off the photophobic condition. I felt God has gifted me with new eyes. Everything was so colorful all around. The world was beautiful! Then slowly I was able to speak again. I blabbered so much as if I was speaking after decades. But I got tired very soon. Then one day (after almost 10 days of being admitted) the nurse, asked me to step down from my bed and take a walk. You can't imagine how happy I was. But as soon as I tried to take the first step, I tumbled over. 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 I was in heaven. I even shed nails and new nails grew in their place.

I was discharged on 15th April. I was going home 'finally' and I was on the seventh heaven. 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 run to the nearest mirror. I still looked pale and horrible. I can only imagine how I would have looked during the first one week. I was prohibited from much exposure to sunlight for an entire year. The best part about that was I skipped prayer at school for the whole academic year.

That year Papa celebrated my birthday with much grandeur as if it was my first birthday. He told me it was my second life. And till today I regard all my doctors, next to God. I owe my life to them. And it was also a miracle because all the 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. Death is peaceful, but life is too beautiful to let go.
  3. Face every situation bravely and fight till the end. If death looks into your eyes, look back and don't blink! :)
  4. There is a Supreme Being in this world, who creates miracles. May be it's Him whom we call as "God". He is all around us, in different forms. For me, He came to me in the form of my Doctors and saved my life.
  5. Everybody may leave you (even your siblings), but there are two persons in this world who will fight for you and with you till the end. They are your Mother and Father. So when the time comes and they need you, don't turn your back at them.
  6. 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).


20 comments:

rrajiv said...

Thank god! never knew you underwent such agony. truly said sanghita Mom & dad are ones world.

rrajiv said...

achha still didn;t get what is that syndrome and Were u in hospital for entire year? You got hospitalized on 31st march and discharged on 15th march

SANGuine... said...

Well it was an experience too... :)

& I don't remember even a single moment when mom & dad left me alone in those 14 days... At least one of them was always there...

SANGuine... said...

@Rajiv...

You can google 'Steven Johnson Syndrome'. You will get lots of details.

Thanks for the correction... Its 15th April, not March :)

venkat_(n)ever_thinking said...

Another piece that made me speechless.. It is so frank, sincere and genuine that I was swollen with emotion as i was reading! You feel as if you are having an intimate conversation with the author..

All's well that ends well.. I know life teaches a lot; but death teaches a lot more i guess..

SANGuine... said...

Thanks for reading :)

Death ends everything... It's always life that teaches us through experiences...

sudip said...

:(

Had you seriously gone through this??
Unbelievable!!

You can't thank God enough for literally blessing you with a second life.

I wish that may you NEVER have to face anything like that EVER. May your life unfolds like a beautiful flower everyday. :)

And you learnt the correct lessons from this & good that you shared it with all.

God bless ya! :)

SANGuine... said...

Thank you so much for your good wishes... :)

& u r right... I can't thank God enough...

U remember I told u that I had declined a Novartis job offer... Do u see a connection now? Coz I do...

Pritha said...

u remember everything so vividly!

SANGuine... said...

Yeah... Some memories!! U never forget them even if u want to...

Nandita Prakash said...

boy u have courage though
God bless

SANGuine... said...

Hey Nandita, thanks a lot for being the first one to vote for my posts on Indiblogger :)

V.M.S. said...

The Wiki article and photos explained what you went through in those days.I extend my deep sympathies..what else I can do.

It also reminds us that the world is not just full of beauty and joy.

SANGuine... said...

Hey V.M.S., thanks for reading the post :)

Rituparna said...
This comment has been removed by the author.
Rituparna said...

Heartening indeed! Glad you're healthy and well now. Be safe and take care always.

SANGuine... said...

Thank you for your wishes :)

Anonymous said...

I can't stop from crying while reading your post. You're a brave person. Did sjs leave scars on you? Just wondering.

margaux taneo philippines said...

my only sister is just like you. she was a copy writer in one of the outsourcing publishing company in the philippines. just last July 4, she was rushed to the hospital . she has same manifestations also and july 5 she was diagnosed with sjs. i am trying to do extensive research on this until i bumped to your blog. you are very strong and you're such an inspiration. the family is very positive that she will surpass this adversity!

SANGuine... said...

Dear Margaux,
May God bless your sister with a fast recovery. Be strong and never lose hope.
- Sanghita