Today
“I think I might have SJS, though we’ll need to order a skin biopsy to confirm that,” my friend Claire overheard one doctor mutter to another. After a quick Google search, we discovered it was an acronym for Stevens-Johnson syndrome, a condition we’d never heard of.
I whispered to Claire that SJS were my exact initials, as if it were a disease made for me. Despite the intense pain, I managed to crack a joke. I was unaware that this diagnosis would soon change my life as a healthy young woman in her twenties trying to get by in New York City.
The day before, I had called an Uber to take me to an urgent care center. It was only five blocks away, but getting down the stairs from my walk-up third-floor apartment seemed like an impossible feat. I was on the verge of collapse. My mind felt foggy, and I had had body aches and chills for three days that kept me from sleeping for more than 10 minutes. Advil and Tylenol hadn’t helped.
After tests for COVID, flu, and strep came back negative, the doctor finally determined that I likely had a new strain of flu that the tests couldn’t detect. I was young and healthy, so despite how incredibly sick I felt, I probably didn’t have anything terminal. The doctor prescribed me a course of amoxicillin to curb my mysterious illness. I went home and took the first (and only) dose that night, of a medication I’d been prescribed many times before, but the next day I woke up feeling worse, panicked and feverish.
My thermometer read 107 degrees and the pain throughout my body was unbearable. I was in fight or flight mode, and the next few hours that passed were a complete blur. I took another Uber back to that same urgent care center, pleading for help through my tears. I was referred to an emergency room in the Financial District, so I took another Uber to get there.
Unbeknownst to me, a rash began to form on my body. It started as small spots on my forearms and cheeks, and within a few hours, they grew into massive blisters from my head to my lower torso. My best friends, Claire and Pablo, arrived at the ER that afternoon after work and school, taking turns being with me since only one person was allowed in at a time. Though they rotated every hour, they heard in the hallway that I would need to be transferred immediately to the burn center at Weill Cornell Medicine on the Upper East Side.
Claire accompanied me on the ambulance ride to the intensive care unit, which would end up being my new home for the next month. By this time, my eyelids were already crusted over, causing my vision to go totally black for several months afterward. During that first night in the ICU, I was poked and prodded while multiple doctors took multiple biopsies from my left arm and placed a catheter into my bladder. My bodily systems were rapidly failing me. More sores developed in my throat and lungs, quickly closing off my airways and requiring a ventilator.
I was so seriously ill that a team of burn surgeons, infectious disease specialists, ophthalmologists, dermatologists and their colleagues surrounded me for several hours at a time. Although the respirator and the Christmas tree of fluids were the only things keeping me alive, my consciousness surprisingly remained intact. I began eavesdropping on every conversation as if I were at a soiree, only I was the star of the party that night.
I had been a difficult patient, or so I had heard from the murmurs during these shift changes. Even though I was heavily sedated I felt the weight of the words being said around me. I became even more disturbed at night and experienced vivid hallucinations. I became an escape artist at night repeatedly ripping out my feeding tube and IV connections during my stay in the ICU. I remember hallucinating several times and was convinced that someone was trying to kill my loved ones.
In the end, my doctors confirmed that I had not only Stevens-Johnson syndrome, but a more severe form known as toxic epidermal necrolysis (TEN), as over 30% of my body was affected. With a mortality rate of 30-50%, I was given a heavy dose of steroids to slow the progression of the disease and a considerable amount of opioids to prevent septic shock. Although I was not a burn victim by definition, the blisters that formed left me with internal and external second-degree burns on all the mucous membranes of my body.
SJS/TEN is an incredibly rare disease that occurs in about one to two people per million. It is an allergic reaction triggered by a medication, usually antibiotics, or even another illness. There is no way to know what caused my illness, whether it was Advil, Tylenol, amoxicillin, or something else. Doctors now tell me to avoid taking them altogether to prevent a relapse—this is a common and frustrating problem among SJS survivors, who struggle to find other ways to manage their pain and illness.
With not enough research into the disease, it’s a miracle that the emergency room doctors were able to figure out what was happening to my body in a relatively quick period of time. I’ve met other people in survivor groups who weren’t so lucky; their misdiagnoses cost them even more pain and long-term side effects.
My nurses were my lifeline. As my body shed layers of skin, blood, and thick mucus at an uncontrollable rate, they applied layers of A&D cream, changed new gauze, emptied the catheter drainage bag, and cleaned my bedpan.
Even without the ability to see or speak, I forged a friendship with some of them that I will never forget. They were also incredibly kind to my friends, allowing them to fill my room with balloons of well wishes and dozens of photos of happier times.
I wondered if I would ever see my nurses again, long after they had seen me through the worst days of my life. I want to thank them forever for caring for me with a level of intense attention that is unimaginable to most.
Eventually, my condition began to improve. Two weeks into my ICU stay, I celebrated my 24th birthday; the head burn surgeon even surprised me with one of my favorite desserts: a rich chocolate cake from Little Cupcake Bakeshop. I was taken off the ventilator that same day. I had daily physical therapy sessions until the day of discharge to learn how to walk again after losing almost 25 pounds.
No one tells you that surviving the ICU is just the beginning. I’m approaching two years since my diagnosis this month, and while my good days are starting to outweigh the bad, my eyes remain the most painful reminder of the battle I’ve survived. While I was lucky enough to regain my sight within a few months, the scarring over my meibomian glands has left me unable to produce tears for the rest of my life. As a result, I regularly see a team of ophthalmologists to treat severe dry eye syndrome, and I recently underwent glaucoma surgery.
There is no cure for Stevens-Johnson Syndrome, only repair for the soul that has endured unimaginable trauma. After leaving my full-time job to focus on my recovery, I began freelance writing, training for the New York City Marathon this fall, and traveling the world within my health means. Most importantly, my soul finds healing by reconnecting with my nurses, meeting other survivors, and raising awareness about this rare disease. As a survivor, my initials, SJS, have a whole new meaning to me.
