Meet Our SJS Warriors
To be featured in our SJS Warrior Campaign, email your photo and SJS story to sjsupport@gmail.com
SJS Warrior: Sammy Smith
In July 2023, I was prescribed Lamictal for my Epilepsy, which then turned into me fighting for my life. I took the medication for one week; starting the second week, I upped the dose. Three days later, I woke up with hives and rash on my chest, hands, face and arms. I immediately went to Urgent Care to then be told it “could” be Stevens-Johnson Syndrome, and they sent me to the ER. Thank God for that Urgent Care Doctor for doing that; I was able to catch it soon!
Once I got to the ER, they put me in observation, and my skin got WORSE. Blisters started forming, and I started itching, and I was in so much pain. My blood pressure dropped, and I almost had to be put in the ICU. After three days of trying to make me comfortable and doing a biopsy, they realized it was too big for them to handle. I was then diagnosed with SJS/TEN. I was sent to another hospital with a burn unit by ambulance, and that’s where it took a turn. My SJS/TEN progressed. I had to have a catheter in and a feeding tube. I was doped up on pain medication because the pain was excruciating.
Once it wasn’t spreading anymore, I went in for surgery. Right before surgery, I was bleeding out of my mouth and couldn’t breathe. I remember hearing, “We might have to put her on a ventilator.” But, by the Grace of God, I was okay! I had the surgery and received a full skin graft.
After that, everything felt a little better. I still had to have my dressing done every day. The “goop” they had to put on me—what fun that was. I was starting physical therapy and getting my vision back. I went back into the OR to get my staples removed, and that felt like everything was going to be okay! I was released to have the feeding tube and catheter removed. Never again will I take for granted eating and using my bladder/bowels again.
After three weeks in the hospital, I took my first shower, and the nurse looked at me and said, “I think you’re ready to go home TODAY!” My husband and I both cried. 75% of my body had been covered. They called me a miracle in that unit.
Stevens-Johnson Syndrome may have affected my skin; I may have scars, pigmentation, and side effects that come from it, but SJS changed my life forever. It showed me that I am a warrior. I can get through ANYTHING.
SJS Warrior: Tara Alvarado
Hi! My name is Tara, and I got TEN from using Septra DS in 2009. I’m a living miracle every day, living life to the fullest!
SJS Warrior: Llyod Venmore
Lloyd was 11 years old when he was prescribed meds for his epilepsy. He spent seven weeks in the ICU before succumbing to SJS. Not a day goes by that he isn’t loved or missed. SJS can affect us all!
Thank you, Denise, for sharing your sweet Lloyd’s story.
SJS Warrior: Gayle Friedman
Hi my name is Stacey Prass. I’m the daughter of Gayle Friedman and I’m here to tell you my story about my beautiful mom who passed away from SJS in 2019.
She had kidney cancer in 2018 and was then told she was cancer free. Three months later it had spread to her lungs so they took the risk and did immunotherapy which in 2019 was only a trial. She ended up with encephalitis and was given steroids to treat it.
Well, the story of my mom ended the moment the nurses gave her too many steroids which led them to believe she needed to be put on a seizure medication called Depakote then was released from the hospital and our weeks later developed a rash and was rushed to Loyola Burn Center and she passed away on December 13, 2019.
I want to thank you for everything you do for this horrible disease and hope that today I can help everyone out there who are survivors of SJS.
SJS Warrior: Oakley Orange
December 2013 will forever be with us as a family. Oakley began having tremors, which resulted in him being put on carbamazepine. The whirlwind began 12 days afterward.
A rash will never be just a rash again for us.
When Oakley was seven, an unknown devastation hit him hard: it was Stevens-Johnson Syndrome. It affected 100% of his body. He lost 100% of his skin, his eyes were affected, and his whole body is scarred from head to foot. He lost parts of his toes on one foot and has ongoing health issues, including chronic fatigue and memory loss from before SJS; he also had his gallbladder removed due to high-fat tube feeds, and his liver does not work properly.
Oakley spent five weeks on life support, with operations to clean his burns every other day. He spent a total of three months in the hospital learning how to walk, talk and eat again. Throughout his journey, he developed many infections that could have taken him from us and battled through many scares with his feeding tubes and lines being disturbed, causing vomiting and an irregular heart rhythm.
Alarms often rang with doctors appearing from nowhere, then the awful news that he had cold sepsis (hypothermia), which had started shutting his extremities down with the onslaught of his organs struggling to do their jobs.
In true Oakley style, he got through and has triumphed to get through college studying science and begin a new journey studying pharmaceutical sciences at university. He wants to be a research scientist to help find out why this happens.
SJS Warrior: Makenna Howell
Hi, my name is Makenna. I was diagnosed with SJS on November 21, 2021, from Lamotrigine. Prior to my diagnosis, I had no idea what SJS was. For me, it started in my eyes. I was going about my life as normal, thinking I had a case of pink eye or a stye. The next day, I developed a fever and started to break out in what looked like hives. My mom rushed me to the emergency room.
First, they thought it was strep, and then mono. I got sent home twice before I was officially admitted and had a biopsy done. I was in the hospital for one month. Most of the time, I had no idea what was going on because I could not see, and I was on a lot of painkillers.
Once I was sent home, the real journey began. I did not recognize myself. I lost 20 pounds, and my body was covered in new scars. My lashes were gone, and my nails started to follow.
I was angry for a long time after. I was angry at my doctors for not telling me what SJS entailed, a side effect of the medication I was not aware of; I was told that if I saw a rash develop to go to the doctors. I was angry that the doctors I trusted almost took my life and that I got turned away multiple times before I received proper care. I was angry that everything I liked about myself visually was no more. I was angry that I would never be able to go outside without sunglasses and would never see the world without a tint. I was angry that no one truly understood what this was like for me. That strangers around me stared and assumed what was wrong with me. I was angry that my family and friends tried to support me but had no idea what it was like. I was angry that I now can not live without eye drops. I had no control over anything that happened to me during SJS.
There is a lot to be angry about when it comes to this illness. I will never be who I was before this. But I am okay with it now. I am not angry; I feel blessed. Blessed to still be alive and to find such strength and empathy within myself. Healing takes time, but my scars have faded, and my lashes have slowly returned, as well as my nails. Through everything I have lost from this illness, I have gained twice as much. I have gained an appreciation for life, and I now know that whatever life throws at me, I can handle it.
I tell everyone I meet about this illness, if not just to spread awareness, but so that they can understand me. So they know why sometimes my right eye is red and the other waters. They can understand where my scars have come from and what I have overcome.
To anyone who has just started their battle with SJS, I am proud of you. I hope you continue to fight. I hope you give yourself grace. I hope you feel the things you need to, but do not hold on to the negatives for too long.
SJS Warrior: Danika Heron
This is my daughter, who suffered from Toxic Epidermal Necrolysis back in 2014. This was the worst time of our lives, knowing that we could have lost her and how close we were to losing her. Danika has lost most of her hearing from this and still suffers from PTSD, anxiety, and eye issues. She was also diagnosed with Chronic Fatigue Syndrome. Danika spent a week fighting doctors to get answers after taking Lamictal for two weeks and Keppra for four days after being diagnosed with Epilepsy. She then spent a month in a burn unit, where she had amazing care. Five years after TEN, a miracle came along with her falling pregnant: a grandson who turns five next week.
It’s been 10 years now. Please look up Stevens-Johnson Syndrome to understand how medication can cause such a horrific reaction. My daughter’s was from Lamictal, but any medication can cause this.
SJS Warrior: Amelda van Helden
This is my daughter Amelda, living in South Africa. This is after 13 days in the hospital and, Amelda now.
When she was nine, she got the flu, which did not want to clear up. We took her to the doctor, who prescribed Penicillin antibiotics. Two days later, she got blisters and swelling in her mouth and tongue. We took her back to the doctor who told us she did not have the flu but chicken pocks. We were confused as she was vaccinated when she was small. The doctor told us she could get it again and should continue with the antibiotics. The next day, she was so tired and said she needed a nap. Later that day, we could not wake her and rushed her to the hospital, where she was diagnosed with SJS.
70% of her body had big blisters, and her skin came off. All the mucus membranes in her mouth and throat, as well as other areas, burned off.
Today, she is alive but only has 50% capacity in her one lung and battles with excessive mucus, coughing and sensitive eyes.
We are blessed to have her with us, but the continued struggle is evident.
She is a strong young woman of almost 18 years, and we are so super proud of how much she has overcome in the past nine years.
Our hearts and prayers are with all the SJS warriors who got their wings. May their loved ones find peace and comfort when times get hard.
SJS Warrior: Joanna Goodgion
My name is Joanna. I was diagnosed on July 5, 2006, with SJS from Lamotigine. Prior to my diagnosis, I had never heard of SJS or had any clue that it was a possible side effect of this medication.
My reaction started days before when I started noticing a rash develop on my chest, and my lips began to swell up. I was brought to a pediatrician who believed it was strep or mono, so they started me on Amoxicillin. On July 4th, I was brought to the ER where they treated me with steroids because my throat was so swollen that it was hard to breathe. Twenty-four hours later, I was back in the ER because I was coughing up blood. From there, they sent me back to my primary pediatrician, and he made the call to the hospital for them to admit me because he thought it was SJS.
I was in the hospital for 10 days and was extremely aware of what was going on even though I could barely open my eyes and I was on a lot of pain medication. Every second was terrifying.
After I was sent home 30 pounds lighter and extremely weak, the recovery process began. I had many treatments to remove the new spots from my skin, surgeries to remove my tonsils and adenoids that kept swelling up with no explanation, two surgeries to fix the scaring in my lips that only allowed them to open about halfway, and many follow-up appointments to doctors’s offices. I had to complete the first half of my sophomore year of high school at home due to weakness, exhaustion, and the amount of appointments that I had.
I will always have to live with some conditions due to SJS. I have to wear sunglasses to go outside and have chronic dry eye. I also suffer from fibromyalgia and PTSD. Even with these, I know I am so blessed to be alive and now thriving.
During the last 18 years, I have found a new strength in myself and compassion for others. I went on to get a degree in education and have taught for 10 years so far. The experience that I went through has helped me in my profession by giving me a deeper understanding of how struggles outside of school can affect concentration in the classroom.
Now, I share my story often and tell others about SJS. I want to spread awareness to everyone I can. I got a tattoo of the SJS survivor ribbon with purple wings for fibromyalgia on my ankle. When people ask about it, I am given another chance to share my story.
From one SJS survivor to another, stay strong and fight on. Let the anger go and look to the future. It makes all the difference.
SJS Warrior: Chaula Shukla
In November 2021, the Tuesday before Thanksgiving, I was hospitalized with SJS. I had taken Bactrim to fight off a staff infection, and I started feeling weird – eye pain, a terrible rash, and flu-like symptoms. Luckily, I had an amazing doctor, Dr. Lederman, who knew that I was experiencing a very serious reaction to the Bactrim and advised me to go right to the emergency room.
On the ride to the ER, I remember my husband telling me, “Don’t Google SJS,” which made me even more scared. I listened to his advice because I was genuinely fearful for what lay ahead. The skin on my face, lips, chest, arms, and feet were all impacted. I couldn’t swallow because my throat had sores. I couldn’t walk because the skin on my feet peeled off. I was in so much pain, and I didn’t know what was happening to me.
Fortunately, my family and friends got me through it, and thanks to Dr. Lederman, I knew early on what this was – SJS. The worst part, for me, has been the impact on my mental health. The trauma of experiencing such a rare medical condition has made it difficult for me to trust that my body won’t attack itself again. The PTSD and anxiety after SJS are real and should be talked about.
Through it all, I’m so fortunate to have my family, who encouraged me, cared for me, and made me laugh; my friends, and most of all, my daughter, Ruhee – she is my life, and the whole time I was in the hospital, thinking of her gave me the strength to fight and try my best to be strong.
My heart is with everyone who has been impacted by SJS/TEN. I consider myself very lucky to share this story. If you are in pain or grieving, just know you are not alone.
SJS Warrior: Tristen Smith
Hello, my name is Tristen. I was diagnosed with SJS in 2007 after being prescribed Zithromax for a cold at 13 years old. I spent a week in the hospital trying to get better before the doctor realized it was SJS.
I had my second SJS hospitalization in 2009 after taking Tegretol for bipolar.
SJS has changed my life, and because of SJS, I had a heart attack at 21. There are no major side effects from that, but SJS has forever changed me.
SJS Warrior: Anamaria Mortensen
Hello, my name is Anamaria Mortensen, and I was diagnosed with SJS in May of 2022.
I was having a sinus infection, and my doctor at the time prescribed a treatment of Doxycycline for 21 days. The next day, I finished my treatment, and the SJS symptoms started to appear. My eyes were super itchy and red, and by the end of the day, I started to develop blisters inside my mouth and chest. After going three days in a row to the ER that night, the doctors finally ruled that I had SJS, and I was transferred to another hospital with a Burn ICU Unit.
At Burn ICU-Unit, I was rushed to get eye surgery because, at that point, my eyes were in terrible shape. Thankfully, I was under the care of the best team of ophthalmologists, who saved my eyes and vision with Placental Amniotic Implants in both of my eyes. After that surgery, I wasn’t able to see for ten days.
I was in the hospital for 13 days, and I was so blessed to have such a great team of doctors who stopped the progress of SJS with Chemotherapy. I honestly don’t remember too much about what was happening around me, but it was the worst nightmare I’ve lived. I was under sedation all the time and had a feeding tube.
I’m so blessed to be alive and have had the best care I could’ve asked for.
When I came back home, everything was so different. I was so depressed; I was afraid and didn’t want anyone to see me with all my scars. Also, I had PTSD. Fortunately, my husband, son, friends, family, neighbors and therapist supported me no matter what. I can’t thank them enough for all they did for my family while I was in the hospital and for all the prayers and good thoughts they sent me while I was fighting to be alive.
Right now, I’m in a better place, and I’m grateful to have survived this horrible illness, but deep inside, SJS will always be in my mind. I always share my story and try to educate everyone I meet about SJS.
SJS Warrior: Jeannine Burt
As it is about awareness, I wonder if I have delivered any awareness of my condition from that fateful day in Royal Northshore Hospital, Sunday, May 10th, 2009, when the skin on my back literally fell onto the arms of a nurse in one piece. I heard “WE HAVE A PROBLEM,” 90% of my skin burnt and shed off. Slowly destroying all my mucosal membranes. Who knew how important Mucus was as a first line of defence against infection.
The largest organ in my body died that day, and I was put in an induced coma not long after to see if my body could sweat on its own again. A certain decider as to whether I lived or died. 15 years on my skin, albeit battered, burnt and bruised, has wrapped around me and held tight like a warm blanket for the greatest second chance anyone could ask for. To be with my family and friends many years more than not.
If I have made you in any way aware of this condition, I would be happy to hear of your thoughts and understanding. It is very hard to provide awareness when at times, the condition is making your life harder than you wish. At other times I am very grateful for the lessons it has taught me about life, love and loss.
I was asked to supply two photographs.
The first is the last time I wore eye makeup and had eyelashes. The second is the 19th operation to maintain and keep my sight.
How quickly your life can change? How much do we take for granted?
SJS Warrior: Rebecca Wraith
Hi, my name is Rebecca, I had SJS in February 2012 when I was pregnant with my daughter.
The cause of my SJS is unknown. I had various tests, etc, and nothing came back, so it was put down to maybe being viral. I have been advised it could have been pregnancy, but I will never know. My daughter was born healthy, almost full term. I had to have scans every two weeks to monitor her because no one knew how the SJS would have affected her.
I still struggle with daily eye battles: dry eyes, misdirected eyelashes, and sensitivity to light. These battles have left me exhausted all the time and have caused me to develop fibromyalgia. My skin can be super sensitive, and my immune system isn’t brilliant.
SJS Warrior: Stuart Doyle
‘Warrior’ is a term that doesn’t fit my own self-image. Truthfully, it makes me uncomfortable.
I’ll circle back…
I’m now 42 – when did that happen? I was 24 when I burst into flames: 24-42? There’s symmetry in those numbers.
Spontaneous human combustion – no warning, no trigger, no allergies. One moment, a chef, a new dad, recently engaged – then poof, ICU, and losing flesh at speed, skin blistering, bursting and sliding off. Eyes fusing to eyelids, cheeks to gums, tongue, throat, lungs, stomach – ignition, heat and invisible flame. Johnny Storm, minus the cool superhero stuff.
The first six weeks, I knew little of how my life would forever be changed – Ketamine induced comas will do that to you. There were, however, a couple of days pre-coma when I knew that shit just got real. But, I was in so much pain, was so oxygen-starved from my throat closing up, and had such a high temperature that I knew nothing but terror and agony. I knew I was dying, though: your mind computes that much. But the details are like trying to catch smoke, which seems rather fitting in hindsight.
TEN took everything I had in my life up until that point. Here’s where it gets interesting, though: pain, secondary diseases and blindness aside. The difference between 24 and 42 is mere perspective. When aged 24, all I saw were the losses because of the condition. At 42, I now see all that TEN gave me, in spite of that pain.
Physically, my life has never been harder. But in terms of relationships, love, fulfilment and meaning? I’ve never been richer. It wasn’t until the flames and ashes cleared that I really knew who I was. It was both the worst and best thing that ever happened to me.
So no, ‘warrior’ feels all wrong to me. Survivor? Fool? I’m not sure there’s a term I’d feel totally happy about. I’m unyielding but flexible, resilient yet fragile. I’m both strong and weak.
Put best, I am flame and smoke. I will burn ferociously when I need to, and drift away on the breeze when the moment takes me. I’m difficult to kill, impossible to catch.
Flame and smoke are who I now am, and inner steel is what was forged during that terrible time all those years ago.
SJS Warrior: Kirsten Bronsveld
In September 2012, I was hospitalized due to excruciating pain in my facial nerve. I was given Tegretol and Carbamazepine for pain relief and calming the nerve. A week later, it turned out to be a bacterial infection, and they put me on antibiotics. Not long after starting those, I developed a rash. I had to change the antibiotics, but nobody thought Tegretol could be the cause.
In a few days my rash became blisters as big as ping-pong balls on my entire body. Due to miscommunication in the hospital, dermatologists didn’t immediately see me when I returned. It took about 24 hours in the emergency ward before I was transferred to Intensive Care. And 24 hours after that, I was transferred to another hospital with a specialized burn unit.
In the acute phase of TEN, I lost 65% of my skin, but ultimately, I lost 100%, even skin on my fingertips and my small toe.
I had blisters in my mouth and throat, and specialists said I couldn’t be intubated because of the risk of damaging my lungs.
I was treated with pigskin; they sewed this skin on mine so that my skin could gradually grow beneath it. It was also supposed to help with pain relief.
Those few weeks with nerve pain, developing TEN and being treated at a burn unit were physically and mentally too much. It was a TRAUMA. A trauma caused by going through several separate traumatic experiences in a short time, when the key issue was whether I would make it, whether I would survive.
I was sent back to the regional hospital after a few weeks with the message: “Your own skin is back, you are healed.” Nothing was further from the truth.
I have had more than 30 eye treatments. The local anesthesia knocks me off my feet every time, and more often, it doesn’t work sufficiently.
I was forced to quit my job as a teacher, which also has been hard to accept. But now, after 12 years, I feel like my life as a post-TEN victim has meaning again—for my family, friends and hopefully, for other SJS/TEN warriors.