Home CommunityPeople Nimarta Singhnamwong is living life on her own terms despite the devastating effects of Stevens-Johnson Syndrome (SJS)

Nimarta Singhnamwong is living life on her own terms despite the devastating effects of Stevens-Johnson Syndrome (SJS)

by Aiden

A candid, inspirational account from a rising phoenix.

By Aiden Jewelle Gonzales

When meeting Nimarta Singhnamwong, an effervescent and focused young woman of 26 with whom I felt an immediate kinship, it’s hard to imagine that at just eight years old, she’d survived the rare Stevens-Johnson syndrome (SJS) and its deadlier and even rarer complication, Toxic epidermal necrolysis (TEN). “It’s a rare but serious disorder that affects the skin, mucous membrane, genitals and eyes,” she calmly explains of the sudden, life-changing event that led to 25 surgeries, burn scars all over her body, and two years of complete blindness, the latter of which was only resolved partially. “It’s usually caused by an unpredictable, adverse reaction to certain medications, or sometimes by an infection. Despite being very rare, it still affects one to two million people per year, regardless of age.” Because of this, she reveals, most of the public and even many doctors aren’t aware that the disorder exists. “I have a cousin in medical school, and when the topic of SJS came up, the lecturer suggested skipping it because it was so rare. My cousin had to stand up and say, ‘I have a cousin who barely survived SJS; it’s not a topic that you can just skip through.’ Thankfully, through the Stevens Johnson Syndrome Foundation, and other survivors, it’s getting more spoken about, but awareness of the disorder is still really low.”

We’d first approached Nimarta after coming across her viral TikTok video in which she shared her truth with the public for the first time, in the hopes of inspiring others that anything is possible despite what many would believe were insurmountable odds. “I never expected that the video would get so many views,” she tells me. “I’d been going through a low phase in life, with the pandemic changing a lot of my plans. I was struggling to motivate myself and draw inspiration from anywhere. One day, the SJS foundation put me in touch with another survivor who was going through depression and suicidal thoughts. When I started talking to her, I remembered I’d felt the same way, and I realised that I needed to help her see that there are no limitations when you put your mind to something. I told her, ‘fake it till you make it; you can’t keep worrying about what people are going to say. Accept your scars as battle wounds in a battle that you’ve fought and won. You need to love yourself for it.”

Nimarta shares the rest of her story with Masala, and the ways that she’d risen from the ashes to forge a life and career for herself through strength of will, tenacity, determination, and her support system.

Can you walk us through what happened when you were just eight years old?

I was born in Bangkok, but due to several unfortunate circumstances, I attended five different schools. I did my middle school at a boarding school in Ooty, and it was during that time that I fell sick with the flu, and I was prescribed Amoxicillin, which is one of the most common antibiotics, and one I’d been taking for years. However, this time, I woke up with a swollen eye which the doctors called a bedbug bite. Unaware of the actual situation, the doctors increased the dose of my medication without knowing that I was having an allergic reaction from the antibiotic.

A few days later, I developed rashes all over my body. I remember going for a shower that morning and screaming because I felt like someone had doused me in hot water, but it was just plain cold water. I had blisters all over my body and I was misdiagnosed again with chickenpox, and subsequently isolated. The next day I remember waking up and my eyes and lips had fused shut because of the burns and I found myself unable to speak, see, urinate and even breathe. The school clinic then informed my parents that I simply had “some severe rashes” and that they were moving me to a hospital in the city. When they put me on the phone to speak to my mum, I couldn’t say a word; not even to call out to her. That’s when she knew something was wrong and took the first flight to India. I’m so grateful that she did, because if she didn’t, I know I wouldn’t have survived.

I was moved to the hospital in an ambulance and that’s the last thing I remember. I was unconscious for three days. When I woke up, my life had changed forever. When my parents had arrived, they’d found me completely naked in a small room with just one nurse attending to me. They gave me the injections and treatment for chickenpox without confirming what it was, which is why my condition went from SJS to TENS. When SJS goes to TENS, your entire body and blood becomes toxic to the level that you start burning from the inside out. There was only a 20 percent chance of survival; my parents fought a war to even get the doctors to start treating me. I think the main reason they weren’t treating me because they didn’t know what was going on.

My parents had to use their connections, and it was only when the health minister of that state arrived that I was moved to an ICCU. After a three-day long battle I woke up and I heard my mum and dad crying, but I couldn’t see them. I found that I had severe burns all over my body, my eyes and lips were completely stuck together, and I had several tubes and IVs on my body.

What did you go through during your journey to recovery? How long did it take?

It took six years and 25 surgeries, mostly for my eyes, but I also had to get a surgery to, among other things, get my period. Because of how rare SJS and TENs is, I struggled to find any treatment for my eyes once I got back to Bangkok, and I even spent three months in Mumbai where I underwent 10 failed surgeries. All the doctors in Bangkok recommended that my mum just give up and put me in a blind school, but she never gave up and never let me give up either. I was homeschooled, and it’s thanks to Mr Anil Kumar who was so patient with me and created every possible method to teach me the full grade four and five syllabi, enabling me to catch up when I entered school. Finally, in 2005, we found out about Dr. Scheffer Tseng in Florida who was the first to develop a treatment for patients suffering from my eye conditions. It was only after his first surgery that I could finally open my eyes for the first time in two years.

When I was blind, I used to imagine people talking in animation, because cartoons were all I used to watch as a kid. I think that’s what makes me a creative person today. There was a 90s Indian series called Shaka Laka Boom Boom (2000), and I used to listen to it and imagine what the characters looked like. Surprisingly, when I opened my eyes, some of them were exactly how I imagined!

That was the first battle we won in this long war. In the same month, I had three more surgeries and 12 more from 2005-2010.

You’ve mentioned that the effects still last until today. Can you tell us how it continues to affect your everyday life?

I suffer the effects of trauma physically and mentally till today. I’m partially blind, I have severe sensitivity to light, dry eyes, occasional double vision, a low immune system, burn scars on my face and body, burnt and bumpy nails, migraines, and sensitive skin and scalp.

Another side effect that bothers me the most in my everyday life is the unpredictability of my vision. I could not get any more surgeries on my eyes after the ones that finally gave me my sight back partially, because my cornea is really thin now. Some days, I have amazing vision, and on some days I start with blurry and double vision. As I grow older, my vision is declining. I’ve trained myself to perform daily tasks or work with my fluctuating vision but when I have to do something new, or travel on my bad eye days, I struggle. Furthermore, with a low immune system, I’m prone to COVID and unable to receive the available vaccines in Thailand, and this has created many new barriers for me to live a normal life.

What kept you sane throughout, and what was the turning point that helped you through your mental health issues because of this?

The one thing that kept me sane through that entire process was music. My mum used to get me cassettes with all my favourite albums at the time, and she’d play the music that I used to love dancing to; I was a born dancer!

It took me a while to accept that I’m still the same person inside and that I’m still beautiful now. My scars have faded because I grew up, and I have skincare that helped me, but when I was young and in school, it was really bad and I was bullied a lot. Every time I tried to change my life around, it led to failure and depression. It was only when I went to a counsellor that I realised that I was expecting a fairy godmother miracle to happen with everything I was pursuing, and that wasn’t going to happen. That’s when I realised that I don’t have to follow the norm. I didn’t have to stay at Assumption University (ABAC) just because everyone in my family did. So I decided to leave ABAC and do fashion marketing.People used to ask me, what are you going to do in fashion? You’re overweight, you have scars, you can’t see, and I told them, I love fashion! I’m going to prove them wrong… and then I did!

For my final year, I gathered the courage to transfer to Raffles University in Singapore, which was a life- changing experience. I fought a war with my parents to move there. I had an answer for everything, including little things like how to read menus successfully, and finally my mum trusted me enough to send me.

This was indeed a fruitful experience for me as I graduated with first-class honours in Fashion Marketing and Management, and I felt independence for the first time, with the self-confidence boost that comes from that, and having a group of genuine friends.

In what ways has this experience impacted who you are today?

Despite having a lifelong disease, I’ve learned to find happiness in small things and moments. Life is always going to be unpredictable but you just have to remember the big picture and work towards the kind of life you want to create for yourself. Experiencing this trauma at a very young age has made me a stronger person today. I’ve faced bullies, rejections, and failures but I’ve just learned something with every experience. For example, after I graduated, I wanted to work in fashion, but it’s not an industry that’s known for being very tolerant even at the best of times.

I struggled to find a job, or even for people to take me seriously. But one of the worst experiences I’ve had was when I was in an interview and they basically dismissed me. When I asked why, they asked me, “do you really think with the way you look you can represent our brand? How did you even think of applying to this position?” I’ve had several experiences like this, even though I always did my job well, and never allowed there to be a mistake in any work I sent out.

However, I pushed through, taught myself digital marketing and social media management, and at the age of 24, I was a Marketing Manager! Later, I helped transition a smart fashion brand to a marketing agency within only three months, and we were one of the first companies that started working again full time in that building after the first lockdown. We were back on track in three months, and nobody had to get fired. Now I own my own digital marketing agency, Upscale Marketing & Consultants, and though we’re new, we’ve had a lot of success in our field. I’m proud of what I’ve achieved because I want these achievements to inspire people; I want them to look at me and realise that the sky’s the limit, even if you have a disability.

Where do you find the strength and resilience to push through the struggle and continue living a happy and fulfilled life?

My biggest strength in life has always been my mom. After going through so much I always told myself I don’t want to live a meaningless and unsuccessful life. I want to work hard, have a successful career and break the social norm for people with a disability. This thought always motivates me to do better and push through. If I didn’t have my family around, I wouldn’t be who I am today. My younger brother, for example, is my best friend. He used to say, “I’ll become a doctor and I’ll help fix you!” They help me stay strong.

Tell us about your hobbies and interests, and what brings you joy.

My two passions in life have always been cooking and dancing. One brings me peace and the other makes me feel confident.

When the pandemic first started, I had a lot of free time on hand as the company I was working for had reduced their working days. I started spending a lot more time in the kitchen, and realised that I finally have the time to create my F&B brand, Tasty Fusions. As a teenager, I used to create fusion recipe videos on YouTube and some of my creations were very popular amongst my friends and family. Now, we’ve become a successful business that delivers throughout Bangkok, and we’re often sold out of my range of fusion dips, which turned out to be a huge hit – I’d suggest you definitely sample our kaphao hummus bites if you’re looking for a moreish treat with a kick!

What advice would you give others who are also survivors, not just of SJS?

People say dance like no one’s watching, I say live life like no one’s watching. Don’t worry about what people would say or think about you. Just do what makes you happy.

Related Articles