MY JOURNEY
Dr. Seema Krishna Mane
I had Stevens-Johnson syndrome in 2007 when I was doing post MBBS internship. Initial 4-5 days, the disease was not diagnosed and it kept on increasing. SJS is the mucocutaneous reaction, mostly secondary to drugs. I took Sulfa and Nimusulide, which caused severe mucocutaneous reactions all over my body. There was skin rash all over the body, ulcers in the mouth, genital areas, urinary areas, anal areas, even in the eye, inside nose, ears. Even a sip of water was like acid to me. My lips were swollen and bleeding even at the slightest touch.
I received proper treatment on the 6th day after the diagnosis was made. I received intravenous methylprednisolone 1 gram daily for 3 days and later oral steroids for a few days. I was kept in a high-dependency unit for almost 12-15 days. Continuous IV fluids and antibiotics were given. Sepsis is the most common cause of death in such cases. I was kept in isolation as my whole body’s skin was peeling like it happens in the burn. Later I was admitted to the normal ward for 20 days for recovery. I was then discharged from the hospital when all lesions were almost healed and I started eating orally.
This was just the beginning of the story.
During whole this time, none of us (my family/ friends/ doctors) knew that my eyes were badly affected. I did receive some drops during hospitalization but did not receive any special treatment for my eyes. SJS caused permanent damage to my both eyes. My tears were dried up completely. Zero tears in my eyes. This caused severe burning, and severe dryness in my eyes. I was unable to open my eyes, very much sensitive to even slight lights. I was given some lubricating drops, which I was putting every 3-4 mins. I used to sit in a dark room for whole days wearing dark goggles. My eyesight also dropped significantly. I could see the faces of people only when they were near to me. I was already preparing for the entrance examination for post post-graduation seat. This disease and later this severe eye problem halted my studies, my life, and my dreams.
I showed many ophthalmologists in the city, all top ophthalmologists. All said no treatment to regenerate the tears and I had to put drops for the rest of my life. It was like a big block to me. I could hardly study. I was in big question that how I would pursue my studies and my life. Even in day-to-day activities, I was dependent on family members due to low vision. I spent one and a half years in the same situation. I did complete my internship and tried doing some study while frequently putting drops.
I appeared for the entrance examination with no hope. My family was more worried about my marriage. After SJS, there were a few black pigmentation marks all over the body including the face. My family tried for a few boys…all rejected me, saying why marry such an abnormal girl. That time I decided, I would stay alone my whole life rather than begging someone to adjust, to marry me.
Days passed, and entrance results were out. I got 149 rank in Maharashtra CET. This was quite a good rank. I was getting all branches, in all top medical colleges. I always wanted to become a neurosurgeon. With such a good rank, everyone was praising me. But I landed in the big downfall of my life. Because of my eye condition, it was difficult for me to even think of medicine branches, surgical branches were out of sight only. For 2 months, I was in the sea of questions; what to do? Which branch to choose? Medicine, pathology, pharmacy, ??? But I want to become a surgeon. How it is possible? My eyes? Whether they will support me? They can’t. Someone, please show me some ways. Some treatment, so that I at least open my eyes and do some work for few minutes, few hours. But no treatment. What to do,?.
Then the day of counseling was there. With no future planning, I took the Gynecology branch. Thinking that normal labor and caesarian are the fastest to do, I can manage with drops. I got a seat at Miraj Medical College. I got a single room, last in the corner on the second floor of the hostel. There were alternate-day emergency duties. I could hardly sleep for 4 hrs. I was all alone. I could do some normal labor. I used to put drops in between with blood-stained gloved hands. I spent 2 months, and I knew that this was not for me.
I again started losing myself. Same time, my Bhabhi called me to inform me that there is some lens for dry eye treatment. She saw some optometrist interviews on a Marathi TV channel. My father wrote later to the TV channel, to which they responded in 2 weeks. By this time my second counselling dates were announced. We visited that optometrist in Mumbai, as guided by a TV anchor. There I was seen by a cornea specialist, and that optometrist put a scleral contact lens on my eyes. This was the moment that changed my whole life. As the lens was put, I could widely open my eyes and could read letters on the vision chart, that to 6/5, A normal vision. I could first time see this world with wide-open eyes.
This gave me and my family a big relief. I can now think of something for my future. The cornea specialist examined my eyes and said “Your cornea is crystal clear. You can even become an ophthalmologist”. To my surprise, I got the best ophthalmology seat in Mumbai. The seat was waiting for me. On the day of counseling, when I was in doubt about which branch to choose. Just before entering the counseling room, one of my friends said to me that if Nair’s ophthalmology seat is vacant, just pick that without a second thought. And when I was sitting on that counseling seat, I was shown multiple seats. The boy from first counselling left that seat and it was just waiting for me. Later I started my new journey with scleral contact lenses in Nair Hospital Mumbai. I was lucky to get exposure to all surgeries during my post-graduation. Later I came to know that, one girl who desperately wanted Nair’s ophthalmology seat, repeated one more year and had 9th rank in CET. She joined me as a one-year junior. That is how I started believing, destiny had big plans for me.
During my PG, I met my husband. The golden-hearted person who never objected to my eye problems ever. During the same period, I was under regular follow-up with LV Prasad Eye Institute Hyderabad and DR. Quresh Maskati, Mumbai. With contact lenses, the journey was ok, not that comfortable. My eyes used to look bigger, and swollen, lubricating drops frequency though reduced, but vision used to become frequently hazy. I used to remove, and clean lenses and again wear them. At least, I was able to do my studies, my surgeries, and my routine work. I used to wear the lens for almost 14-16 hours, all night duties I could do just because of these lenses. I became completely dependent on these lenses, but independent in my life.
After ophthalmology, I pursued a cornea fellowship. It was Virendra Sangvan sir who sewed the seed of working for SJS patients in me. I desperately wanted to join L V Prasad under him, but I got a fellowship in Sankara Nethralaya Chennai. I was a little upset but never knew that again destiny had a bigger plan for me. There were doyne of the ocular surface, dr. Geetha Iyer and Dr. Bhaskar Srinivasan. They operated on me for punctal cautery and mucous membrane grafting during my fellowship. I still remember the first-morning post-punctal cautery. I could open my eyes in the morning without putting single lubricating drops. I spent almost 5 years dependent on lubricating drops. Even at night, I used to wake up frequently just to put drops. Also 3 years, handicapped by the scleral lens. After punctal cautery till today, I have not again become dependent on the scleral lens. Sometimes due to some corneal issues, I wore contact lenses but hardly for a day or two. Also lubricating drops frequency is drastically decreased. This is how destiny has made me free from all the blockages so that I can work for my SJS patients.
Later mucous membrane grafting gave me more confidence in my healthy future eyes. All this has led me to practice more in the cornea, to establish myself more for SJS eye diseases. And with all these surgeries, blessings from my parents, my siblings’ support, my doctors, and my teachers’ guidance. I am now able to do practice and help SJS patients. I am running an SJS patients support group on Facebook and WhatsApp. I am looking to work more and more for all eye disease patients, who are struggling for one hope.
