Overcoming what should have ended her: The life of an SJS/TEN survivor

At just 15 years old, Narifa Hira’s life changed forever. What began as a routine course of antibiotics prescribed for a minor illness, quickly spiralled into a medical nightmare—one that would leave her scarred in every possible way.
The young girl had been experiencing flu-like symptoms, including rashes on her skin, and was being treated for what doctors initially thought was a simple infection.
But within days, her body began to betray her. Her skin blistered and peeled, her lips cracked and bled, her eyes became painfully dry, and she lost the ability to speak, eat, or see clearly.
What everyone thought was a simple illness turned out to be Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN)—a condition so rare and severe, most people do not survive it. But she did.

The onset of a nightmare
On Friday, June 4, 2021, the young girl had woken up with flu-like symptoms and had stayed home from school. She had visited a private medical practitioner who operated close to her place of residence, and she was diagnosed with the regular flu and was prescribed antibiotics.
However, as her symptoms intensified, she visited a private city hospital on Thursday, June 10, where she was taken off the antibiotics and prescribed cream and other ointments for the skin outbreaks, as doctors ran tests to figure out the problem.
The following day, the teen was admitted to Georgetown Public Hospital Corporation (GPHC) – following a referral from the private hospital – as her condition rapidly deteriorated.
While the private hospital had diagnosed her with SJS, they informed her parents of her poor prognosis: she may not survive the illness. Doctors at GPHC later discovered that the teen was also suffering from TEN.
Confused, frightened, and in unimaginable pain, Narifa found herself surrounded by strangers in sterile hospital wards, with no clear answers about what was happening to her body. The days blurred together as the pain intensified. She was unable to eat solid food or communicate clearly. The once vibrant teenager found herself confined to a bed, her spirit slipping away as her body battled an invisible war.
She remembers her fears vividly—especially the night her hands swelled so much she could barely recognise them. That night, she whispered through the pain, asking for her mother.
When the morphine started working in and before drifting into what she feared might be her final sleep, the young woman prayed—not to be saved, but for peace.

Understanding SJS/TEN
SJS and TEN are severe, potentially fatal skin reactions usually triggered by medications or infections. They begin with flu-like symptoms and rapidly escalate as the skin and mucous membranes blister and peel. SJS affects less than 10 per cent of the body’s surface area, while TEN affects more than 30 per cent. Both can lead to complications like sepsis, organ failure, and even death—10 per cent of SJS patients and up to 50 per cent of TEN patients do not survive.
For survivors like Narifa, the trauma does not end with hospital discharge. Recovery can take months or years, and is often marked by long-term complications—vision problems, chronic pain, skin and organ damage, and lasting emotional scars.

Doctor with a difference
In the chaos of critical care, one person stood out to Narifa: Dr Vedika Panday, a resident in internal medicine. While many hospital staff hurried from task to task, Dr Panday saw Narifa—not just the patient, but the person. During one especially harrowing moment when Narifa’s veins became inaccessible and an IV had to be placed in her neck, Dr Panday offered her hand and told her to squeeze during the pain.
But it wasn’t just medical care that made an impact—it was tenderness. Narifa recalled that Dr Panday would comb her hair and often sat with her in silence when words were too much. According to the young woman, Dr Panday reminded a fading spirit that she was still human, still worthy, and still seen. Those small acts of compassion played a pivotal role in helping Narifa choose to fight again, even when she had mentally given up.
“She did not treat me like a patient or a diagnosis. She treated me like a person who needed care, not just treatment…I cannot even count how many times she quietly came in just to check on me, to make sure I was still breathing, still holding on,” Narifa recalled of the kindness of Dr Panday during an interview with the Guyana Times.

A room called isolation
Eventually, Narifa was moved into the Burn Care Unit—a single, enclosed room meant for intense treatment. She thought her introverted nature would help her endure the solitude, but the silence amplified her suffering. The pain never truly left, and mentally, she began to shut down. One day, overwhelmed by it all, she told her mother she wanted to go home to say goodbye to her family.
“I had shut down. I could not take it anymore. I chose to be selfish as I looked my mother in her eyes and said, “Please take me home, I do not want to do this any longer. I want to see my papa, my grandma, my dog and my brother before I leave this earth”. I was done with the constant tests, the bandages, the pain – it all became too much. I refused to eat. I refused to talk. I did not want to exist in that space anymore,” Narifa recalled.
After expressing these thoughts, Narifa said she heard her mother’s sobs echoed down the hallway of the hospital. But once again, it was Dr Panday who returned—not to lecture or coax, but simply to sit. Dr Panday’s kindness reminded Narifa that she still had fight within her.

Healing in slow motion
Leaving the hospital was not the end of the young woman’s battle—it was just the beginning of a different kind of war. Her eyes, severely damaged, could no longer produce tears. For nearly a year, she had to wear dark sunglasses to shield her sensitive eyes. When she eventually returned to school, students whispered and mocked.
“Could you imagine a 15-year-old teenager, being forced to change and adapt to a whole new lifestyle? Could you imagine having to throw lubricating eye drops to moisture your eyes because you cannot physically produce adequate tears? Since June 2021, I haven’t shed a single, physical tear when I cried; not because I mastered the power of self-control or I do not have any emotions but because I literally cannot produce a tear of my own anymore,” Narifa explained.
“Not only can I not produce my own tears, but my eyes are so sensitive to light…I had to wear dark shades until up to April, 2022. When I had returned back to school after the summer break of 2021, a lot of my peers questioned if I was “blind”. Sometimes, I’d bump into things while walking, or close my eyes for a second when passing an area with a lot of wind, squint to see on the white board, having to have my face centimetres away from the laptop screen because I cannot see far, and constantly having to throw eye drops. These are all the things and more that made me a ‘laughing stock’,” she further recalled, as she reflected on her experiences.
According to Narifa, her trauma did not make her stronger—it made her more sensitive. Loud environments overwhelmed her and her emotions spilled over more easily. The past haunted her, with nightmares and flashbacks dragging her back to cold hospital rooms and painful procedures.

What recovery really looks like
Every day after her discharge was a struggle—physically, mentally, emotionally. There were many days she did not want to eat or speak. But with time and the support of a few key people, she began to inch forward. She found strength in those who checked in, who did not rush her healing, who just sat with her when she needed company.
At her lowest, she looked at pictures of her younger self and asked, “Why me?” She didn’t understand why she had survived, when survival came with such a heavy cost.
“What’s my purpose? Why did this happen to me? Did I upset God in my previous life? Is this karma? Why did he save me for me to live in misery and regret?” Narifa often questioned.
“The emotional scars and the trauma were far harder to heal than the physical ones,” the young lady, now 19, admitted.
However, she noted that despite these bouts of emotional breakdown, she is happy to have survived. “I am happy to had been given a second chance to share and educate the world about my unfortunate experience… I had come to terms with the fact that I would never look or feel the same. I had lost pieces of myself in that hospital bed, but somehow, I found something even greater – the resilience to keep going, to see myself beyond the scars, to remember that even when everything seems broken, there is still a way forward.”

A dream reimagined
During her recovery process, Narifa said her vision became so impaired that schoolwork—especially her passion for accounting—became nearly impossible. She slowly lost motivation, letting go of the dream she had held onto for so long.
Despite her disability, Narifa pushed forward. She passed her Caribbean Secondary Education Certificate (CSEC) exams, even topping her batch in Office Administration, thanks to extra time accommodations secured by a dedicated teacher, Miss Nirupa Manroop. And in 2024, on a whim, she applied for a job in accounting—a field she had once thought lost to her. Not only did she get an interview, but she was hired as an Accounting Officer, proving that some dreams are simply delayed, not denied.
She is now studying for a Diploma in Business Management at Nations University.

Her message to that 15-year-old girl
If she could speak to her younger self—the frightened girl in that hospital bed—she would say:
“You are not defined by the scars, the pain, or the fear. You are the girl who fought even when she did not think she could. You are the girl who, in the darkest of days, still found a way to keep going. You are so much stronger than you realise, and one day you will look at yourself and see not just the survivor, but the warrior who made it through. You are worthy of love; you are worthy of kindness.”
Narifa credits much of her survival to the people who never let her feel alone—her mother, whose unwavering love never faltered; Miss Manroop, who fought for her academic success; and most deeply, Dr Panday, who treated her soul, not just her symptoms.
Narifa said these women reminded her that healing is more than medicine—it’s human connection.
Where she stands now
Four years later, Narifa still battles anxiety, sensory overload, and the trauma of what she endured. However, she is slowly finding purpose in the pain, and using her voice to raise awareness about SJS/TEN.
Narifa explained that, “surviving SJS was not just about enduring physical pain. It was also about coming to terms with the scars it left behind, visible and internal. It took away from me things I once took for granted, but it also taught me to cherish life, celebrate even the smallest wins and hold onto hope no matter how dark it got.”
Her journey is not over—neither is her fight.
“My SJS is not a curse. It is a part of my story—and I am still writing it.”