Harini Boraluwa

Condition: SJS

“In 1995, when I was four and a half, I developed an abnormally high fever. My pediatrician was away, so my family took me to a hospital, where the doctor assumed that I had malaria. She prescribed Fancidar, a discontinued treatment. Not wanting to wait another week to get our pediatrician’s opinion, my parents gave it to me.

I don’t remember much about the SJS (Stevens-Johnson syndrome) reaction, but I do distinctly recall being on the floor feeling hot and everyone around me being in a panic. I was taken to hospital where I developed blisters, ulceration in my mouth, and lost my fingernails and toenails.

The blisters eventually faded, but my eyes kept deteriorating. Our doctors in Sri Lanka decided to stitch my right one closed (tarsorrhaphy). Luckily, a professor from Oxford was studying in Sri Lanka at that time and heard about my condition. He recommended that I seek treatment in England. My parents selflessly uprooted their lives so we could go to Oxford. The British government granted only me and my parents visas for treatment. My mother was devastated, as we had to leave my younger sister with family for six months.

The medical team at Oxford University Hospitals was great. They developed dark glasses with shields for my extreme photophobia (light sensitivity) and I wore that, along with a visor. They did several operations to undo my stitched right eye.

All that I wanted upon returning to Sri Lanka was some normality, but I struggled greatly with the heat. The staff of my school didn’t understand my condition, making it very hard to learn. They didn’t realize when I couldn’t see the board or tolerate all the chalk dust in the front of the room. I was eager to learn, so in lieu of a traditional education when I was in hospital – which was often – I learned from my family.

For five years we would spend half the year in the UK for treatment. In 1999, my father spoke to the President of Sri Lanka. He must have been very persuasive, and that conversation resulted in visas for all four of us. We moved, full-time, to England.

I started school in 2000. I loved school and had much better accommodations for my condition. My sister and I did not speak English when we arrived but caught up quickly by immersing ourselves in school and reading (mainly Harry Potter).

As a teenager, I was very self-conscious. I went out of the classroom to use my drops so that others didn’t see me. I was too scared of breaking my dark glasses to play a sport.

After the Oxford professor retired, we were referred to Nottingham to an SJS professor. Years later, we met someone at a friend’s birthday party who told us about BostonSight. I had tried scleral lenses for about a month but found that they gave me headaches and were uncomfortable. The doctors at Nottingham didn’t want me to go, but since we were out of treatment options in the UK – the place we’d moved to for better treatment – we felt we should look in the US as well.

I came to BostonSight in 2005 with my dad. I remember the amazing sense of relief from the trial devices. I could walk around the office in full light without my glasses or visor. I didn’t need to stay in the dark anymore. I simply can’t explain what that felt like.

That first weekend we went to New York city wearing a pair of trial devices. Amazingly, I could just walk around and see the world. We took the ferry to the Statue of Liberty, and all I took with me were regular sunglasses. I felt incredibly cool and no longer self-conscious. The PROSE devices were comfortable from the first insertion and gave me the most relief out of any treatment I’ve tried.

I remember mum crying when I got home. I had no glasses or visor anymore and felt my first surge of independence. I’m sure that was an adjustment for my parents, as I’d relied on them my whole life. No one in school recognized me when I returned to school in January. I was eager and happy to learn and asked my teachers for extra work so I could catch up on what I’d missed out on. Before PROSE, I was unable to study for very long. I could, and did, read everything with my devices in. I was determined to learn and wanted to defy SJS, a disease which was completely out of my control. I studied hard for my GCSE and was at the top of my class. After my A-levels, I went on to study chemistry for four years at university. It was the first time I’d lived away from home – something I never would have been able to do without PROSE.

I went on to teach chemistry, but it was tough to manage my eyes, and I found it hard to stay on top of planning/marking. I kept that up for two years and was then diagnosed with neuropathic pain. I’ve been prescribed Amitriptyline as a neuropathic pain killer. My hope is to work with kids with disabilities at a college (UK trade school) this fall. As a teacher, I’ve met kids who struggle with low-self-esteem, and I always tell them that the hard times will be temporary. I became much better at asking for help in secondary school, and that’s something I mentor these kinds of kids to do.

My life is not without challenges. I can’t just fly out the door in the morning or crash when I feel tired. I must maintain my PROSE care regimen. To stay on top of my dryness and pain or it will be even worse the next day. It has helped a lot to talk with other survivors, and BostonSight is one of the ways I’ve met other people with SJS. I’m lucky to have family and a partner that supports me. I think the greatest thing I can do with my experience is to pay it forward and help others who are struggling with SJS.

I’ve been returning to BostonSight from the UK every two years for the past 13 years. Alan Kwok, OD, FAAO, knows my eyes well, and he’s been with me since almost the beginning. It never feels like I’m just some patient coming here for treatment, but that I’m coming back home. I have been touched and overwhelmed by the selfless generosity and kindness of everyone who has supported me in my journey, which began 24 years ago. The incredible team at BostonSight has a very special place in my heart for the genuine love and care they have towards patients. I am eternally grateful for the donation by sponsors who have enabled me to receive the gift of sight. It is a true blessing.”