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.

 

SJS Warrior: Mary Holder

Hi, my name is Mary.

I had SJS and TEN in 2011, aged 45.

I had just been diagnosed with Lupus and started a medication called hydroxychloroquine sulfate. Within a few days, I developed swollen lips and a blistering rash.

Unfortunately, the leaflet that came with the medication did not list these as side effects, so it took a little while for me to realise this was a reaction to the medication. I ended up in intensive care with 98% coverage and second and third-degree burns.

I spent quite a lot of time in hospital fighting for my life, and luckily, I survived.

Sadly, the SJS has advanced my lupus, and I now have monthly infusions and steroids to control my immune system.

It took quite a while to make any sort of recovery, and it was an uphill struggle. However, the whole episode made me rethink my life completely. I realised that life was far too short and decided, along with my family, to make changes. We moved to a rural area and now live on a small farm. We live in a peaceful setting in the countryside, and I believe this has helped me recover physically and mentally. I was diagnosed with PTSD a few years ago and was luckily offered therapy in the form of EMDR. Since having the therapy, I have managed to finally come to terms with the horrific time that I and the family went through back in 2011.

I am truly grateful to the SJS community across the world. I reached out to them at a time when I really needed help. They were supportive and incredibly knowledgeable. SJS and TEN is rare, and not much is known about it. By raising awareness, it helps people make informed choices about what medications they take. I campaigned hard after my SJS in 2011 to ensure that the leaflet that accompanied the medication I took included the side effects of SJS. I am incredibly happy that this medication leaflet has now been updated. It is really important that we educate ourselves on what we are taking and the possible side effects they can cause.

It has been 13 years of ‘extra time’ in my life so far and I feel incredibly blessed to still be alive.

 

SJS Warrior: Juliet Haitz

I had SJS/TEN when I was nine months old from phenobarbital after a febrile seizure. This was in 1990, and not much was known about the disease. My parents were told chances of survival were slim. I was in the ICU and Burn ICU for two months. Had it not been for my dad being a physician, and doing rapid research, and aggressively advocating for my care, I may not have made it.

While I, of course, do not remember any of this, SJS/TEN has been a part of my entire life, battling long-term effects. I don’t know a life without daily severe eye pain and complications, including trichiasis, light sensitivity, and dry eye. I don’t know a life in which I haven’t had to explain my scars, why my eyes are red, and educate people on a rare disease (not an easy thing to do as a child).

I am forever grateful for the care I had that saved my life and that more is learned about the disease every day. While I’ve seen eye specialists my entire life, I am thrilled to have found a leading ophthalmologist who will not give up and continues to try new procedures. I have had two eye surgeries in the past six months and have my third next week. I feel so fortunate to still be here 35 years later and owe it to future warriors to see what procedures can help.

To all my fellow SJS/TEN Warriors, I love hearing your stories; it is so comforting to know I’m not alone. You’re all so inspiring, and keep fighting for new treatment and research!

 

SJS Warrior: Hudson

This is my son Hudson.

In December 2022, Hudson was admitted to the hospital with SJS/TEN. Two days prior to his admission, he was sent home from A&E with just a ‘viral rash.’ Over the course of the next two days, his lips had swelled and he struggled to breathe, which resulted in being blue lighted to hospital. It took two days to get an SJS diagnoses with the help of two other hospitals.

Hudson spent two weeks in the hospital, and he suffered lesions in his eyes, blisters in his mouth and throat. He was treated with what they called a cocktail of antibiotics, several different creams for different body parts that were to be applied strictly every four hours—steroids for the lesions in his eyes and many other medications to help with the pain.

His skin is still a daily challenge to maintain, such as creams to stop flare ups, simple things such as finding the right suncream and with him being sensitive to sunlight which causes his skin to flare.

Hudson is now a happy two-year-old. Although the road has been long, we are still not at the end. We are grateful to still have our boy here.
Hudson is still under several departments at the hospital and undergoes surgery soon to get to the bottom of his constant watery eyes, runny nose and upper respiratory issues, which unfortunately limits him from doing what a normal active two-year-old would be doing!

If there is one lesson it has taught me as a parent, is to never take anything for granted.

 

SJS Warrior: Erik Corona-Torres

This is our son, Erik. When he was 13 years old (2013), he was diagnosed with SJS/TEN. He was prescribed azithromycin and taking Ibuprofen, so we don’t know for sure what triggered it. We were given a 40% chance of survival.

Erik was hospitalized for a month, and before being discharged, he was diagnosed with vanishing bile duct syndrome, which made him a top candidate for a liver transplant.

Currently, he suffers from some eye issues and has scars on his body.

We consider ourselves blessed to still have him with us, and although he was close, he didn’t require that liver transplant.

Erik is now living a no-worries kind of life.

Every first of August, we request for our city to light up our “M” blue in honor of everyone who has suffered from this horrible disease.

 

SJS Warrior: Brendon Brown

My name is Brendon Brown.

On March 12, 2007, at the age of three, I was hospitalized for 77 days with SJS/TEN from what we believe to be an allergy medication. I had burns over 98% of my body. I had 50+ eye surgeries and procedures, including an artificial cornea transplant (Boston K-Pro), which gave me about eight years of decent vision in one eye. Unfortunately, I got an infection in that eye, and the K-pro had to be replaced with a donor cornea, which immediately scarred over. I am now blind, but otherwise, I am doing well. I just graduated with my Associate’s degree and am looking for a job.\

 

 

SJS Warrior: Veronica Zenkner

I had SJS/TEN in 2002, and my reaction was believed to be from Motrin. My parents took me to our local hospital, and I was misdiagnosed with fifths disease. After that, I was brought to a larger hospital, where they determined they couldn’t help and transported me to the burn unit at Loyola Hospital in Chicago.

I remember being taken into the emergency room, stripped down and then I was out. I woke up not knowing I had been in a coma for a week. I was hooked up to all kinds of machines and tubes. My hair was shaved off, and I had scabs from my head to my knees. One giant scab covered my lips, and I had a large open wound on my head. Bacitracin was lathered all over my sores. My mouth felt like I had a million sores. And strangely, I spoke with a southern accent for a good couple of months after I came out of the coma.

I’m thankful I’m alive; there were a couple of close calls. I needed blood transfusions and around-the-clock care. My eyes suffered the most and still hurt me more than 20 years later. I would give anything to wake up with normal eyes. It’s depressing; it affects my life, my kid’s lives, my job, and my relationship with friends.

SJS is absolute hell, but I’m a fighter, and I made it through. I am so thankful for the friends I’ve made through this support group. It helps to know I’m not alone. Love you all.

 

SJS Warrior: Zoe Larkin

Hi, my name is Zoe Larkin. I was first diagnosed with SJS in October of 2020. My journey started with one simple medication that was meant to help me and not kill me; that medication was leflunomide. Leflunomide is used to help with rheumatoid arthritis; I hadn’t been on it longer than about five to six weeks. The symptoms started off as a cold, and I didn’t think much of it at that moment. Then my feet started itching, followed by spots, then black lips, then all hell broke loose, and my body felt like it had been dipped in a severely hot deep fat fryer.
BUT I made it, and I won the war with my own body. I’m still alive.
I lost my skin and every nail. I felt embarrassed at the time, but as the years have gone on, I’ve learned to embrace my scars, my skin pigmentation and my ability to move forward.

I think SJS should be taught as if it happens often because of the number of doctors who have never dealt with it. They also don’t know how to treat you properly for the syndrome. I was fed paracetamol and oramorph. When ideally, I should’ve been in ICU or a burns unit.

I’ve walked through hell, and I’ve lived it, stared death in the eyes, but still came out stronger.

 

SJS Warrior: Jessie Campbell

Proverbs 14:12: “There is a way that seems right to a man, but its end is the way of death.”

This is what happened to me, and a sudden life-threatening disease forced me to be admitted to ICU (with so many daily treatments, procedures, so much pain, and delirium.) I contracted sepsis while there, besides the original life-threatening disease from a severe adverse reaction to an antibiotic. I was there for 19 days and two days in a step-down unit, for 21 days total, and am recovering at home.

ADONAI counseled me to let a very miserable virus/flu take its course, but I, as I have often done, took the proverbial bull by the horns. I went to an emergency room; I just panicked. I’ve had lots of work stress this year and just folded. The medication prescribed I had qualms about it as the Ruach HaKodesh (Holy Spirit) highlighted it to me. Still, I convinced myself to take it. Within two days, symptoms of SJS/TEN came crashing down on my body. The result was I truly walked through the shadow of the valley of death, I nearly gave up early on, but he sustained me even in horrendous pain. I could have lost my eyesight as it was attacking my eyes. I had membranes put in regularly as they dissolved or shifted; there were constant procedures done to various parts of my body, and many were painful.

The amazing side is, his word also says, “All things work together for the good of those who love HIM and are the called according to His purpose.”

Well, HE fulfills HIS word. ADONAI purged and transformed me through this illness in the deepest of ways. I didn’t even know I needed such purging.

I constantly shared my faith and prayed over others. I was hooked up to numerous devices, a feeding tube, and IVs, and I was not able to eat or use the bathroom independently. The Ruach HaKodesh still used this broken vessel; it was as if His glory poured out of me. His glorious light, in the midst of the horrendous pain and distress. People were touched by His Spirit, even the world-class Ophthalmologist who had to perform a number of painful procedures told me that my joy was contagious.

 

SJS Warrior: Erica Champaigne

My name is Erica Champainge, and I was diagnosed with SJS/TEN on 8/31/23, six days after I first noticed symptoms after having my psoriatic arthritis prescription, Sulfasalazine, dose doubled. 

The moment I started noticing symptoms, I messaged my doctor that since upping my dose, my eyes hurt, and they were so strained that in the mornings they felt stiff and hurt moving, and that all my lymph nodes were super swollen and incredibly painful and I was unable to sleep with my head on a pillow. I asked if I should stop the medication.

The nurse responded five hours later that what I mentioned was “concerning for possible infection,” asked if I had any cold/flu-like symptoms (which I didn’t), and and said to reach out to my primary care provider for further investigation.

After three separate days of ER visits, a new doctor FINALLY did research, and I was taken by ambulance to a larger/better facility in another state as no one in my area was familiar with or knew how to treat/care for SJS.

Two days later (after getting denied multiple times), I was life-flighted to the nearest ICU burn unit with intake notes stating “high probability of imminent life or limb-threatening deterioration due to Stevens-Johnson Syndrome.”

At the peak, nearly 65% of my body was covered in blisters, with my skin sloughing off in my esophagus, throat, mouth, scalp, and entire upper body, including both sides of my hands and the bottoms of both feet being one large excruciating blister.

As a single mom to a 13-year-old who had to start their first day of eighth grade in the midst of this chaos, I made it my priority to stay positive and persevere no matter what! 

I was discharged on 9/9/23, where I finished healing at home for a month before returning to work.

It was agonizing, excruciating, stressful and scary, but the experience was so humbling, especially because of all the love, care, support and positivity I received from medical professionals (especially nurses!), my friends, family, co-workers and anyone who heard my story!

 

SJS Warrior: Michael Araneta

I was diagnosed with SJS on September 25, 2015, at 15 years old. I had no idea what SJS was at the time. I was playing football and was diagnosed with pneumonia. I was given amoxicillin to help fight it so I could play the next week, and started reacting. I would try to take the amoxicillin, and my body would reject it. SJS started in my mouth, where my skin started to come off. 

I kept going to the ER with my parents every other day and was sent home, being told it was a virus. After my third ER visit, I was admitted to the hospital. That night, blisters started to form on my arms, legs and face. 

The reaction worsened, and I wasn’t doing well. The SJS had taken over my body, and I could no longer see. The doctors could not figure it out until my eye doctor came in and diagnosed it on a whim because he saw SJS patients in medical school. This man saved my life. Once the specialists FINALLY knew what I had, they started treatment to help me, and I started to get better, but I was told I probably wouldn’t play football again, would be scarred, and my lungs wouldn’t work as well. I was released from the hospital a few weeks later.

Once I was released, I was weak, scarred and discouraged. But I wouldn’t let SJS consume my future and not let me live my life. I was determined to be better and healthier than I was before SJS. I went back to school, played football, and wrestled. I got stronger, became even healthier, and became a better person than I was before SJS.

Fast-forward to now. I became an EMT because I wanted to help others the way I was helped when I was sick. I am now a firefighter in Arizona and have never been healthier, and I have proved everyone wrong. I did not let SJS define me, but it will always be a part of me. I educate as many people as I can about SJS and want more awareness of it. 

I hope everyone with SJS doesn’t let it define them and knows you CAN live a long, healthy life afterward, even with the scars and what comes with it. Live your life.

 

SJS Warrior: Katie Niemeyer

SJS is a severe reaction typically to a medication with an overreaction of your own immune system causing your body to respond by attacking its own skin and mucous membranes causing the body to blister and burn. Basically, what happens is protein markers go rogue and decide your skin and mucous membranes are not your own and attack them causing your skin to blister and burn like you had been in a fire.

What’s concerning is that it can initially present with flu-like symptoms, but it advances so quickly causing permanent damage before doctors truly know what is happening.

Imagine the week starts like any other. I go to school on Monday, followed by dance lessons, then home for dinner, do my homework, then go to bed.

The next morning, I woke up with really irritated eyes, a very sore throat, and a pretty high fever. My parents figured it was the flu. I spent the day in bed, feeling lousy, with the worst flu ever.

Wednesday, I woke, and now I not only have blisters on my arms and down my chest, but I can feel them down my throat. It’s too painful to swallow. It feels like sharp glass every time I try.

My parents rushed me to the doctor. As a teenager, one would think this would be embarrassing, but I just sit, drooling on the floor as I wait to be admitted to the hospital. 

By day four, I am in a hospital bed with second-degree burns. My parents are told the chances of me surviving are slim, and if I live, I’ll most likely be left blind. One moment, I am a normal teenage girl, and the next moment, I am in the hospital, burned from the inside out.

Thirty-five years later, drawing on my experiences as an SJS survivor, healthcare professional, speaker, and parent, I have channeled my resilience into entrepreneurship and philanthropy. I reinvented the sweatband called Handana, to keep sweat from dripping in my eyes due to the damage and sensitivity. I initiated a nonprofit dedicated to raising awareness and funds for SJS research and new treatment protocols. I am committed to sharing my story of this deadly yet poorly understood autoimmune disorder. I shared my story on podcasts, magazines, national television and for corporations, including Under Armour.  

Please know you are not alone. I strive to be a powerful voice and advocate for all those affected by SJS/TEN.

 

SJS Warrior: Barbara Bennett

I was diagnosed with SJS/TEN last year, 2023, at age 43. I am epileptic. I take a primary anti-seizure medication (Briviact) to prevent Grand Mal Seizures. But for the past several years of visiting numerous neurologists, we are trying to find what can help my Absence Seizures. I was instructed to try the medication Lamictal (Lamotrigine). 

After two weeks on the medication, I began to see rashes on my belly, and my arms and eyes were very itchy. Once I learned that I had difficulty swallowing my daily medication, my husband took me to the closest ER. I was then transferred to another ER, but learned from the doctors that I needed to be in a burn unit. I was transferred to a hospital and admitted for two days, but they, too, did not know what to do with me as this hospital did not have a burn unit. 

My husband and I were not taking this well as we grew frustrated even as I progressed with more pain all over my body. I was transferred to a hospital that had a burn unit. Once I was there, the burn unit team was amazing. I didn’t understand why I wasn’t transferred to this place all along. 

Even though I went through pain and difficulty walking, talking, and eating, I progressed so quickly and impressed the doctors with my improvement. The nurses educated my husband on how to change the dressings on my body and how to apply Aquaphor on me. I owe it all to this specific burn unit at this hospital. The staff treated me and my husband as if we were family to them. Fast forward to today, and I have zero open wounds. I have light-colored markings on me, and they are fading away slowly but surely. I am walking better, eating better, and fighting to stay strong!

 

SJS Warrior: Lacey O’Rourke

I was diagnosed at three with SJS in April 1992. I was seen at the ER for an ear infection and prescribed Augmentin, unknown to my parents that I was allergic to Penicillin. I was given two small doses and quickly began fighting for my life. My body immediately broke out in a red, blistering rash, my eyes began to swell shut, and I had labored breathing.

My parents took me back to the ER where I was admitted for testing. I had NO prior health conditions. The doctors couldn’t figure out what was happening, so I was transferred to Wake Forest Baptist Hospital in NC. Upon my arrival, my condition worsened. I began bleeding through my kidneys, losing my hair and fingernails, had skin lesions similar to a third-degree burn, stopped eating, could not be touched, had a feeding tube, and lost vision in my left eye completely. 

Testing continued with a liver biopsy and ultrasounds of my eyes, and was given special whirlpool baths (which I hated with a passion). I was in constant pain and turmoil. Although I was only three, I very clearly remember the intense pain of the reaction and treatments.

When I was awake and not sedated, I spent most days listening to cartoons, having my parents read to me, and listening to cassette tapes. I even celebrated my fourth birthday in the hospital with a Cinderella Birthday Cake and Cinderella Barbies. I didn’t eat any cake and slept mostly through the day, but my parents were doing all they could to “keep our family normal.” 

Finally, after weeks of testing, my parents were told by a very knowledgeable doctor that I had SJS. To this day, I still receive care from this same physician. My parents were also told that t my left eye had experienced two cornea melts and I would not have sight in my left eye again.

My right eye needed mucous membrane grafts to save my sight. I had multiple childhood surgeries on my right eye to sustain sight. I also experienced being underweight, sick, and fragile with a very low immune system. I spent many days in and out of hospitals for pneumonia and other chronic lung illnesses. I received sinus surgeries as a child and had a full FESS reconstruction surgery at age 31. I had horrible dental problems due to SJS. I was seen at UNC Chapel Hill for several dental surgeries to recover any healthy teeth as a child and as an adult. 

My condition stabilized as best it could when I was five. I did start school on time and was academically gifted; however, I had visual barriers, looked noticeably different from my peers, and never had perfect attendance due to doctor appointments. SJS caused me to have chronic dry eye, sensitivity to light, and looked different as I had no eye lashes. My vision in the right eye stayed at 20/70 from age five to 15. 

At 15, I was faced with another trauma from SJS while sitting in my Honors High School English Course. I began having very blurry vision that panicked me. I was rushed to my ophthalmologist to get answers. My disease had grown worse causing continued cloudiness of blood vessels covering the cornea. I had functioned like a “normal girl” until SJS struck again. I got my permit at 15, and I read books independently. This was taken from me when my doctor shared that my vision went from 20/70 to 20/200. I lost the ability to drive and had to learn to use assistive technology to improve my new quality of life. I began using CCTVs and ZoomText during my senior year of high school.

My resilience and motivation did not go unnoticed by my peers or school staff. Upon graduating high school with honors, a full college scholarship, and a 3.75 GPA, I was awarded a special award known as the “Jamie Tuttle Award of Courageous Character.” I attended college and earned my BA in American Sign Language with a minor in Interpreting. I continued my education by graduating with a Master’s of Arts in Clinical Mental Health Counseling with a concentration in Christian Counseling. I have been working as a Licensed Clinical Counselor since 2013. I am Nationally Board Certified and have also gained my Clinical Supervision Counselor License since 2019. 

I am a wife and a mom of three beautiful daughters. My family is everything to me. My experiences with SJS have shaped my faith in God and aided in creating my spiritual relationship with him as my Lord and Savior. A continuation of faith in God has been the anchor through my SJS storms. I am blessed to be alive and to know that God has a purpose for the pain. He is all I need and has provided me the gift of compassion and understanding. It takes a special person to sit through an individual’s toughest times in life and God has given me this skill to help others.

Lastly, my most recent endeavor was the need for a double lung transplant at Duke University. Due to the long-lasting effects of SJS and the damage to my lungs, I am living with 33% lung functionality. I began using oxygen about two years ago to help combat chronic breathing conditions. I use the oxygen tanks when my O2s drop below 90 (which happens more often than I wish). I am still under transplant evaluation and go back to the treatment center at the end of July.

If I can leave any warrior with any advice, it is that you have the power to choose. Choose to fight even when it’s hard, choose to live even when you feel like dying, choose to try even when you think its impossible, choose to tell others what you need even if you are scared, choose to love even when you do not understand, choose to seek hope even when you do not see a way forward, choose to make peace even when you are in a chaos, and choose to find faith in God even if you feel like he is a million miles away. He is always listening.

 

SJS Warrior: Jeriann Peabody

In September 2011, I was prescribed Lamictal, which was supposed to save my life, instead, it nearly cost me mine. 

After 28 days on this drug, with countless doctor/hospital visits with one false diagnosis after another. None of the symptoms I had were visible to the doctors, so no one took me seriously. Even when I was slurring my speech, my eyes on fire, and running on and off fevers, they kept sending me home. 

Finally, a rash developed on my chest, my tongue blew up like a golf ball, and my eyes were so swollen. My mom has always been my hero because she has saved my life numerous times. She diagnosed my SJS/TEN after doing some minor research. She immediately called an ambulance, and they rushed me to the hospital. 

At this point, the rash was spreading like wildfire. My local hospital knew this was out of their hands, as they did not have a burn unit. They immediately called hospitals in Boston to see who was better equipped to deal with my case and rushed me right over. Where they biopsied to confirm SJS/TEN. I’m thankful to be surrounded by some of the best hospitals in the world.  

I went straight into a coma for three weeks. Doctors from all over came to work on me. Blisters covered my entire body, over 90% of my skin sloughed off, hair fell out, nails were gone, and surgery after surgery was done while I was in ICU. I had a tracheotomy, was on oxygen, breathing/feeding tube, and wrapped from head to toe, and my skin was so burnt they had no spot for an IV. 

I had Sepsis and fevers that rose to 109°, which had shot my memory and I still struggle with it daily. My family came to say their final goodbyes as no one was sure I’d make it through the night. I was given a five percent chance of survival. But we did not lose hope. Our faith kept us going, and prayers saved my life. 

We were told I would not be out by spring. But sure enough, I was out in a month’s time, known as the feisty survivor in the ICU. However, I ended up back in ICU two weeks later for a bit. Doctors had said the worst was over once I pulled through. 

No one warned me that this was just the beginning. This was lifelong. From ongoing eye surgeries/procedures, internal organ damage, many autoimmune diseases, skin discomfort, and lifelong infusions to keep me stable.

I had to learn how to walk, talk, and write again. I was blind, and I am still technically blind, but I wear PROSE that gave me my vision and quality of life back. Every day is a struggle living with this nightmare. However, this illness does not define me, but it is who I am now, a different version of me that I am learning to love all over again. 

Remember, you are not alone in this fight!

 

SJS Warrior: Janine Cuesta

Hi, I am Janine Cuesta, a victim of SJS/TEN way back in 2005 due to taking expired paracetamol. I suffer from red eyes, itchiness, and sudden blisters all over my body. It’s hard to tell that I have survived for almost 20 years now with lots of bullying and sacrifices that I endure every day.

I hope to tell the world I am part of the warrior campaign. I am willing to share all my insights to lift up others and remind them that life must go on to survive.

 

 

 

 

SJS Warrior: Duncan Olowu

Hi, I am Duncan Olowu, Male, now a 54-year-old Nigerian resident.

Following a dental intervention in mid-August 2021, I was on an Augmentin 1gr/Cataflan regime. I suddenly felt feverish on 21st Aug 2021 and took an anti-malarial. 

That night, I had bumps develop on some parts of my body. By the next morning I had bumps all over and went to the hospital and was administered hydrocortisone injections and tablets.

By the 22nd, the bumps had worsened, and I went to another provider where I was diagnosed with SJS/TEN with over 35% of my body affected at that point.

I was in intensive care for about 20 days, and it was a harrowing experience for myself, my wife, and three kids. To the glory of God and the doctors he used, I made what was considered a miraculous recovery, and I was eventually discharged for home convalescence.

There were times I could see the doubt in the eyes of the various consultants who took care of me, due to my age and other health-related issues, but they kept up brave faces and knuckled down to get me back on my feet.

They did a fantastic job. My major and lasting impact was my eyes, also now I have a fear of any medication, regardless.

I try very hard to talk to as many people as I can about my experience and the need to be extremely careful taking medications generally and the drug groups indicated for triggering SJS/TEN.

 

SJS Warrior: Erin O’Brien

In August 2014, I was a new mom to a five week old baby. I developed a skin infection while breastfeeding, which required a visit to the emergency department with baby in tow until my spouse could get to us from work. This visit ended with surgery to remove the infection, followed by an IV course of Bactrim and two more weeks of Bactrim pills at home. 

A couple of days after finishing the antibiotic, I developed a hives-looking rash on my chest and a fever, along with swelling in my throat that prevented me from swallowing Benadryl and Tylenol as my surgeon, who amazingly answered my call very early in the morning, recommended. I returned to the emergency department with my worsening symptoms and to stump the staff, except for one highly experienced infectious disease doctor who recommended assessing me to “rule out” diagnoses of Stevens-Johnson Syndrome, but he suspected SJS right away.

I was admitted and treated with IVIG the next day, and ultimately transferred to a larger hospital’s MICU, where I would stay for 10 days, followed by six more on the regular medical floor. There I was treated with more IVIG, tube-feeding, and comfort measures (pain medications, petroleum jelly on gauze over my skin, medical honey ointment, eye drops) to ease the extreme pain of my blisters on my skin, eyes, and mouth, ultimately affecting more than 70% of my body.  

What I remember from the MICU: missing my newborn who could not visit the ICU, the strange phenomenon of being awake in the ICU, and the kindness of the nurses and certain resident doctors who all came to visit the “rare case of SJS/TEN.” What I don’t remember: people who visited when I ran a high fever, the time my vital signs tanked and I “coded,” and being carefree when I see a rash on myself or my child or when taking a new medication.  

I thankfully came through my experience with TEN relatively unscathed, though I needed talk therapy and acupuncture to alleviate my PTSD symptoms which emerged a year later. As tough as it was to be away from and recover with my new baby, I am so grateful I got to fight SJS with new mom energy!

 

SJS Warrior: Tellis Lamar

The Day My Life Changed, here’s my story Tellis (Ted) LaMar Jr.

In November of 2000 I was prescribed allopurinol for gout. I was refereeing a football game, and I started getting thick yellow mucus forming in my eyes. The next day I wasn’t feeling any better so I took my temperature and it was 103.8 so I went to Urgent Care where they told me I had the flu.

The next day I was not feeling any better and started sloughing in my mouth, and also looking like a person with chicken pox. I went back to Urgent Care again and a young doctor said he believed it was SJS and to go directly to the ER. 

They started running tests but then all my organs started shutting down. They air lifted me to UVA Burn Unit, where I was finally diagnosed after my skin biopsy that it was SJS/TEN. My whole body felt like fire.

When my mother arrived to UVA, they told her to start planning for my funeral. My mother was not about to accept that. My skin was just falling off of me and 90% of my body was burned. The bottom of my feet was the only place on my body that was not burned.  

After about a mouth of being in the burn unit, I started getting better and they moved me to PCU. However, my lungs started to collapse after eating an orange popsicle, I had to get moved back into the ICU.

I was at UVA Burn Center for two months and walked out of there once I started getting better. My vision was blurry. My eyes never got any better and started going to the eye doctor twice a week. The SJS basically left with my kidneys torched and legally blind after 12 eye surgeries to save my eyes, not to repair my vision.

Today at 52 years old, I am truly a survivor and have been through a lot. I am loving life with my beautiful wife Tonya, and experiencing true happiness.

 

SJS Warrior: Madhura Srinivas

My name is Madhura Srinivas and I experienced SJS/TEN in 2009. 

My doctor in India prescribed a new drug without giving me any indication for possible side effects or drug interactions. He didn’t sufficiently explain why he was changing my drug. But I was 21 years old and had immense trust in my doctor. A few weeks after I had been taking this medication, I developed a high fever and sore throat. My doctor didn’t correlate the symptoms to the medication and doubled my dose of the same medication. Two days later, I developed rashes and blisters in my mouth and the fever was getting worse. 

When I was finally hospitalized, I was told by my physician that theres a chance I might not survive. I was kept conscious throughout the course of the adverse reaction. The pain was unbearable. I was temporarily blind for a few days, my digestive tract sloughed off and sustained long term damage, my skin sloughed off my back, torso, my palms and soles of my feet. My nails came off on both my hands and feet. 

I struggled for years from photophobia, sensitive skin, PTSD and intestinal issues. It made my other autoimmune conditions worse as well. My life and ambitions changed completely after this reaction.

In 2024, I’ve designed my life to live with certain limitations and I work as a trauma aware psychotherapist. My healing will be a lifelong process as my nervous system continues to heal from the trauma. I still struggle with triggers but I’m grateful to have a chance at life and to be able to help others in some way.

 

SJS Warrior: Jeanette Schnitzer

I don’t recall the exact beginning and time frame of my Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis. In 1991, at six years old, my mom took me to my doctor with a sore throat which turned out to be Strep. Without thinking much of it, he prescribed Amoxicillin, which I had taken before. Within days, my eyes started swelling shut, I had blisters on my lips and my skin was sloughing off at the slightest touch. My grandpa finally said enough and got me to the hospital within hours of me almost losing my life. My doctor had misdiagnosed me with Measles, but walking into the hospital the doctors there recognized it as SJS.

I spent two weeks in the ICU burn unit at Children’s Hospital, most of the time in an induced coma. I don’t remember anything, and I am truly grateful for that. My skin was 82% covered in quarter to half dollar sized blisters. The blisters went to my left cornea and destroyed it, leaving me completely blind about a year later. My right eye is thankfully stable after many years of struggle trying to figure out what would cause blurriness (eyelashes) and I still have days where it seems to be bright red for no reason. Other than my eyesight, I was very fortunate not to have any other side effects.

In high school, I had to do a senior research paper so I chose SJS/TEN. Up until that point, my family and I struggled with very little information about what had happened to me. I was absolutely blessed to meet Jean, Julie and Kerry and they were able to provide so much information on SJS/TEN not only for my paper but I was also able to complete my Gold Award in Girl Scouts, giving speeches to local Kiwanis clubs and at Girl Scout headquarters, where Kim Christiansen from 9 News was invited and did a short piece and interview on my award.

Today I work as an Assistant Manager, I have an amazingly supportive husband who has been by my side for almost 22 years and we have two wonderful kids, 11 and seven. Everyday I am grateful to still be here to find that bright glimmer even through the tough times.

 

SJS Warrior: Arianna Crayton

Hi, my name is Arianna, and my story began in Brooklyn, NYC 1998. I got sick when I was three years old due to an adverse reaction to amoxicillin/penicillin. The effects at the time were that I was 99% blind, my skin peeled off to the point where I looked like I had third-degree burns, and the permanent effect left me with one functioning lung. 

I was in and out of the hospital, and eventually, the doctors told my family that the New York air wasn’t good for me and that we had to move, and supposedly the move might not be enough to persevere my life. According to the doctors didn’t think I’d make it to the age of seven years old. Obviously, they didn’t know me, and God were locked in. I’m 29 years old now, I can see, I’ve graduated high school and college with a bachelor’s degree in business management, and I’m currently a travel agent for friends and family. 

The positives definitely outweigh the negatives. When I was younger, of course, I missed out on a lot due to my health, I didn’t have a social life like the other kids, and I had to miss out on school trips or school days because of doctor appointments, but some of those doctors appointments, had me traveling to other states. Now that I’m older, I realize how blessed I truly am, and I have a great head on my shoulders. I have goals that are in motion right now, and I choose to have a positive outlook on life rather than focus on anything negative.

 

SJS Warrior: William McCormick

SJS/TEN left me with permanent damage to my entire body! SJS/TEN has ruined my life, left me with no teeth and gum disease. I can’t see well, and have all kinds of permanent damage. My entire body was burned, inside and out.

I can’t describe the pain and horror of going through this. I had to have my blood changed many times, tubes put into my heart, and my lungs x-rayed two times a day. I was kept sedated most of the time and could not eat anything. I had several seizures. I had biopsies and was given Chemo. 

The doctors did not know what to do. A professor, medical students and doctors from other hospitals came to look at me Monday through Friday, every week. I should have charged admission. My teeth and eyes should have been treated while I was in the hospital as a result of the reaction to the antibiotics, Cipro, Levaquin, and Bactrim. I’m in PAIN ALL THE TIME. When this happened to me in 2012, doctors didn’t know what to do.

I tried to get compensation, but lawyers would not help. The makers of Cipro, Levaquin, and Bactrim should pay compensation for this! People that have SUFFERED from this SHOULD BE TREATED and COMPENSATED! 

Life will never be the same. My teeth and eyes should have been treated then, as now, insurance will not cover it. This ruined my life. It would have been better if they had let me die!

I’m almost 72 now and waiting to die!

I never fully recovered from this. It’s been 12 years, and I deal with this daily. My skin still feels like it’s on fire. I can’t eat or see, and I’m in pain all the time. Doctors will not prescribe pain meds because of the opioid “epidemic.”

 

SJS Warrior: Katie Pennell

In May 1995, I was put on Diflucan. That summer was the “summer lost.” On Monday, June 12, I woke up with my eyes crusted shut and blisters on my neck and right arm. I went to my allergist. He took me off the Diflucan. I saw my allergist several times over the week as my condition worsened. I was about 50% covered in blisters on my legs, arms, and back. These blisters were sizes from a dime to a dollar and filled with fluid. I actually sloshed when I walked.

I went to the allergist on Monday, June 19, and he said I should see an infectious disease doctor. He asked me what he could do for me. I lost it. Please put me in the hospital. I went in around 4 p.m.

We called my sister and told her what was happening. She took the first flight out and arrived around 8 p.m. No orders given. Tried IV six times. ER doctor got one in my left arm. Had to have an arm board to keep it still. 11 p.m., still no orders.

By Tuesday, June 20, I was 75-80% covered in blisters. They were on my arms, legs, feet, hands, neck, back, hair, face, mouth, and private areas. Because I was very dehydrated and required antibiotics, morphine and other medications, a doctor put in a central line. I was later told if I had waited one more day to enter the hospital, I would have died.

I have vague memories of the first week. I remember that my feet swelled so bad that I could not walk. My day looked something like this: wake up, use one warm washcloth to open my crusted eyes. Even with my eyes open, my vision was so blurry that I couldn’t see well. We tried eye drops, but they only helped a little. Get another warm washcloth and use it to open my crusted mouth.

I was to have twice-daily whirlpools. They hurt so badly. After I returned to my room, from the whirlpool, my husband, sister, and the nurses would slather Aquaphor on my skin and wrap me in gauze bandages. I looked something like a real life mummy.

My skin was debrided, blisters removed, once a day by a dermatologist. He told me one night that I had an amazing faith considering what I was going through. After the debriding, I would be slathered again and bandaged. I was treated very much like a burn victim. They talked about moving me to a burns unit in Cincinnati, but the doctors and my sister felt it was too risky.

The biggest fear was that the open skin would become infected. I did develop a few, but they either upped my antibiotics or put bacetracin on me. The doctors tried to find a pain medication that would make my whirlpools feel better. As a last resort they tried morphine. It worked and gave me few side effects.

During this time, visits from my daughters were bad. They had to wear gloves and a mask. I was in an isolation room. My youngest cried and told me that I wasn’t her mother. My oldest didn’t know what to do.

I slept through the 27th-my oldest’s birthday. By Wednesday morning I was alive again. My doctor gave me a stern talking to. He basically told me to get my act together and start healing. I was terrified to go to the whirlpool. The chaplain layperson came in and prayed with me. Then a priest my family knew came in. He and the layperson prayed over me to give me strength. I made it through the whirlpool and things started turning around.

From that point on, I continued to get better. My sister, bless her heart, dropped everything to be with me. Through her efforts, I feel she saved my life. My best friend came to see me almost every other day. She took care of the girls several times. She gave my oldest daughter a birthday breakfast and cake.

My husband – What a trooper! He did things for me I know no other husband could have done! I am so lucky and blessed. He was there constantly. He was caring for the girls, the house, and visiting me. During all this, he was interviewing for Principalships. He got his job with Milford, all the while spending the night in the hospital.

I came home on July 5th. I was a little scared of what life held in store for me. I tired so easy. Just walking to the kitchen was a chore. Eating was still not fun. Thank goodness for Jamocha shakes. I worked hard to get my stamina back, but it was hard. I had to rest a lot. By August I was feeling some better. My skin had finished peeling by then. My sister and her family came for a visit. She told me many things I didn’t remember. Funny things I had said. Her husband took pictures to document my scars.

I remember one night during the first week I was in the hospital. I saw my sister crying. I thought she was upset because she missed her son. She said no, she was crying because she was afraid–she didn’t want to say it–afraid that she wouldn’t be able to save me. Years before she had been a mobile nurse and spent six weeks in a burns unit outside of Atlanta. She hated every moment of it. Little did she know that this experience would help her communicate that knowledge to the nurses and my husband. This knowledge saved my life!

I continued to go to my dermatologist long after I got out of the hospital. Close to the last visit he asked me if I fully realized what I had been through. I of course said yes. He then told me that I was more than a little lucky; I should be pushing up daisies. The two conditions I developed can be fatal. SJS and TEN are very serious reactions.

Yes, I still have scars, dry eyes and nails that look funny, but I am here enjoying my life. How lucky and blessed I am.

 

SJS Warrior: Conor Dolan

On Friday, January 28, 2022, our sweet, innocent, and strong 6-year-old Conor woke up with swollen lips and a red-dot-like hive forming on his face, quickly progressing to his chest, back, and arms turning to lesions and blisters; a fever of 105°F, a sore throat, and inflamed, glassy eyes. Little did we know, this was the beginning of a long, painful, and life-threatening battle with SJS/TEN.

Rushed to the ER, Conor underwent a battery of tests. Despite negative results, his symptoms worsened, with blisters spreading over 50% of his body. Recognizing the severity, Conor was transferred to the Pediatric ICU at Wolfson’s Children’s Hospital.

Upon arrival, Conor’s condition deteriorated. Blisters covered almost 80% of his body, merging into large, open wounds. His SJS advanced into TEN, with blistering wounds inside his mouth, nose, eyes, throat, esophagus, lungs, digestive system, and urinary tract. Conor resembled a burn victim, with his skin dying and shedding.

The open wounds exposed Conor to severe infections. For 14 days, he fought for his life in the ICU; doctors said his case was the most severe they’ve seen. His age and the unknown cause make him a special case.

Throughout his ICU stay, Conor received care from nurses, consultations from leading experts, and wound care from specialists. He was under heavy sedation and narcotics to manage his intense pain, remaining in a twilight consciousness.

Despite this harrowing ordeal, Conor’s spirit shines through. His smile lights up our lives, and his bravery and strength are awe-inspiring. Conor was determined not to let SJS/TEN win.

Conor was in the hospital, for 35 days, 15 days total in PICU, and he got ICU delirium; he was on TPN, two transfusions, one blood transfusion, OT/PT.

Conor made a recovery and survived. We would like to say, it’s not easy. The speed and urgency to get Conor from the ER to PICU were of utmost importance. Once symptoms started we were told “it had to run its course.” Having faith, belief and being mindful what was said bedside was crucial in Conor’s fight. Why? Even though Conor was heavily sedated, he could hear and mentally was aware of what was said around him. 

Two years post we see; child psych for PTSD, pulmonology for respiratory issues and a regular checkup for ophthalmology for scar tissue in eyes. We are extremely grateful for those that were part of Conor’s survival and journey. We would like to tell those affected by SJS/TEN that “Tough times don’t last, tough people do.”

 

SJS Warrior: Lisa Fox

I recently celebrated my 15th anniversary of surviving SJS/TEN. I decided to do my part by sharing my story to create awareness for this rare illness. Sharing my catastrophic misfortunes is not easy for me. Still, it’s time I start acknowledging what I’ve been through and give pause for what I’ve overcome.

I was 39 at the time and had taken a sulfa-based antibiotic after a routine procedure. After three days, some minor flu-like symptoms began, but I overlooked it. On day five, I spoke to my doctor’s office, who instructed me to stop taking the drug.

A bit of back history: I had taken this same antibiotic approximately 13 years prior for a bladder issue and developed a rash on my body. When I called the doctor about this, they said to stay out of the sun. At that time, I was pregnant with my son, and it was Thanksgiving weekend, so it was not summer-like weather. I wondered why they would say such a thing but didn’t question it as I trusted they knew best, and my thinking at the time was you just didn’t question a doctor.

Back to day five… My fever was 105 degrees, the rash was consuming my body, golf ball-sized blisters in my mouth, my eyes were burning, and I was lethargic, all of which terrified me. After speaking to the doctor’s office, the only advice given was to stop taking the drug. I felt something more critical going on, so my husband and I decided to get to Emerg.

At the local hospital, I was rushed through triage and isolated in a room while they waited for the infectious disease doctor to examine me. It was fairly quickly that they diagnosed me with SJS as they just had a SJS patient a few days prior, now intubated and in dire shape. In that moment, I felt like I was the lucky one being diagnosed so quickly and felt horrible for the other patient. It was explained that it was a rare illness and there wasn’t much they could do for me other than pain meds and white blood products to boost my immune system. Basically make me as comfortable as they could and wait the reaction out. They also explained that this was life-threatening.

I remember having so much work and life going on that I didn’t have time for this. Crazy when I think back as the words “critical” and “life-threatening” didn’t even phase me. Essentially, my responsibilities were far more important than my life. I spent about one and a half weeks at the local hospital, and extreme measures to keep me isolated were taken due to the high risk of infection.

I was getting worse, so they transferred me to the ICU Burn Unit at Sunnybrook Hospital in Toronto. That’s one scary place…the sickest of the sick…rooms are negative air/private rooms, but all have windows to the ICU nursing station. I felt like I was in a fishbowl. Two and a half weeks at a 10/10 on the SJS scale. They were updating my family, suggesting if I kept getting worse, I would enter the TEN scale, and the odds of not living through this nightmare would rise substantially.

As per the psych doctor, my children–who were in their teens–couldn’t visit. The main reason is how scary I looked would have traumatized them. Everyone who knows me knows my kids are everything to me. My lifeline, and although I was in critical shape, not seeing them was the worst thing to me at the time.

How I looked, well, I don’t want to share the pics as they are traumatizing; however, it’s best to explain that it looked like I was dropped in a pot of boiling water. It’s been so long, and I forget the exact percentage of my skin that was affected and sloughed off, but it was high. I was wrapped up like a mummy, and my dressing changed daily. I could not eat anything as the pain in my throat was intense, and a feeding tube was too painful to put in. Doctors said I needed to digest 3500 calories. If I didn’t consume this amount, they would force the feeding tube (Tim Hortons Ice Capps became my “medicine” thanks to my family). They scraped my eyelids regularly, and because this was such a rare case, I was visited daily by all the residents and fellows examining me, taking pics and learning from my case.

By about the end of the second week in the ICU Burn Unit, things began to improve and I was out of the woods and on the road to recovery. Recovery was long, but I felt grateful I was fairly healthy then and my body could fight as hard as it did. As I was sent home to recover, I had been given a list of meds as potential triggers (high risk- low risk) but have never been given any reassurances on what exactly might trigger this again.

Throughout the last 15 years, it’s been challenging to navigate the over-the-counter and prescribed drug world. As I aged and battled another life-threatening illness in 2019, my anxiety increased. It goes without saying that I am truly blessed to have survived SJS/TEN, as many don’t, and my heart goes out to anyone affected by this rare illness.

 

SJS Warrior: Nicole Chapman

Hello, I am Nicole Chapman. I am 37 years old. I was diagnosed with SJS in September of 1993 at the age of six.

When my parents took me to the doctor, I was misdiagnosed with measles. They told my parents to watch my temp and keep me on Tylenol. About three days later, I woke up and was unable to open my eyes due to swelling. My body had blisters all over. My parents took me to the ER, and they admitted me. I spent two days at the local hospital in Klamath Falls, Oregon. I was then life-flighted to Portland, Oregon, to the burn unit, where I spent the next 21 days.

The doctors had to surgically remove my top layer of skin. They then wrapped my body in pig skin for protection. When my new skin began to grow back, the pig skin would slough off. This was painful as the nerve endings were hit by air. After a few days of trying to figure out how to keep me comfortable, one of the nurses rubbed my body down with a shortening. It covered the nerve endings and relieved the pain, and I could get some much-needed rest.

They never figured out what caused my SJS. The doctors told my parents it was most likely a sulpha drug.

Since having SJS/TEN, I have had numerous other problems, such as my fingernails not growing correctly. To this day, they still crack and split,  becoming very painful. The treatments that the doctors have recommended have not helped.

In 1996, they put glass tubes in my tear ducts. I have had a lot of eye surgeries. I had the bottom eyelashes frozen due to lashes growing into my eyes.

My ears also suffered a lot of damage. I had surgery to remove the excess wax because it doesn’t drain. The first time, there were 11 layers of wax. They described it as peeling an onion.

I have had a lot of joint pain since SJS, along with a lot of different diagnoses throughout the years. No answers as to what has caused it all. Other than that, the SJS is probably contributing to it.

Many years later, after showing pictures to a new doctor, I was told my case was TEN.

In January 2014, I was taken to the ER and ended up having my gallbladder removed. Talking to other SJS patients, a lot of us had to have it removed at a young age. 

In March 2016, I had a sore throat; on Wednesday, it wasn’t any better. I made an appointment with my doctor but couldn’t get in until the next Monday, five days later. The next day, Thursday, it was getting worse, so I went to the ER. By this time, my face had a rash, there were blisters in my mouth, and I could hardly eat or swallow. After numerous tests, the ER doctor said it looked like another SJS case.

In April 2017, we formed SJS Awareness Oregon. We hand out many SJS fact sheets each year. We have also donated many kid’s toys, books, and games to the local hospital and sent care packages to other hospitals around the country. I am very thankful to the amazing board members and an amazing community for supporting me in spreading awareness.

I have been lucky to meet quite a few survivors in person. Comparing stories has been very healing.

2024 marks 30 years since I have been diagnosed. I am thankful to everyone who has helped me on my SJS journey.

 

SJS Warrior: Angela Anderson

Angela Wanpen Anderson was born on March 17, 1993, to Paul and Wanpen Anderson in Urbana, Illinois. Her mother struggled with infertility for 14 years but was able to conceive two children with the help of an infertility procedure called GIFT. Her son Timothy was born three years before Angela in 1990. 

Angela was a shy but bright child, dedicated to her education, with a passion for music. As she grew older, she came out of her shell and became the life of the party. Angela became a kind, caring young woman who emitted sunshine anywhere she went. There wasn’t a place Angela went, where people didn’t know and love her. 

On Christmas Eve, 2015, Angela presented with an eye infection and flu-like symptoms at Carle Hospital in Illinois. Unfortunately, Angela was not diagnosed in time and didn’t receive the proper treatment. Angela passed away on December 28, 2015, four days after being admitted to the hospital. She is greatly missed by her parents, brother, friends and everyone she met. 

Following Angela’s death, her parents asked for donations for SJS research in lieu of flowers at her funeral. After Angela’s funeral, more donations came pouring in in memory of Angela. Wanpen and Paul desperately searched for someone doing SJS research, and after almost a year, they got in touch with just the right team to complete their search. 

“Finally, Dr. Elizabeth Phillips at Vanderbilt University Medical Center answered the call and wanted to start a research project specifically dedicated to SJS/TEN research. Wanpen and I met with her and her team at VUMC and liked what they had to say. By this time a year had passed and we had received even more donations. So, in December of 2016, we donated $22,000 to the SJS/TEN research fund in memory of Angela Anderson,” says Paul.

The Andersons believe, as so many do in our community, that SJS/TEN awareness and research are essential for getting SJS into the public eye. The Andersons hope to one day see a test for earlier identification of SJS, to eliminate the “guesswork out of the diagnosis, so doctors could treat it quickly.”

 

SJS Warrior: Stephanie Campbell

Hi, my name is Steph! 

A short while before my third birthday, the doctors diagnosed me with SJS. From a severe allergic reaction to Motrin, my immune system turned on itself and burned my body from the inside out to fight off the drug. I spent two months in the burn unit after being transferred to three different hospitals. My body was engulfed in third-degree burns; I lost 97% of my skin, all my hair, nails, and eyesight. 

The fact that I survived is a miracle, and I feel so blessed to now have the opportunity to be a mom of a 15-month-old, beautiful son and a wife of a wonderful, empathetic husband. Blindness and the aftermath of SJS have brought many challenges. Still, I continue to be resilient and persevere thanks to God, family, and friends.

 

SJS Warrior: Lydia DelaTorre

Hello, I am happy to share my story for awareness and advocacy.

My reaction started two weeks after a half-dose taper of Allopurinol. In July 2017, I was in finals week for school, so my stress was high. I noted my temperature was 100.4 with what felt like a sinus infection, tender gums and a fibromyalgia flare. My mouth felt ulcerated, like I ate one too many sour candies. A couple days later, my temp spiked to 103, and the ER released me home that day after an IV and “normal” workup. That night, I hit 105 but was too exhausted to return to the ER.

A call to my primary care doctor urged me back into the ER, with the clinic calling in ahead for them to expect me. I was admitted, and it took two days of observation for undeniable SJS signs. I was transferred to an ICU Burn ward to give the medical support and skincare I needed as Toxic Epidermal Necrosis set in. After discharge, I lost my hair, and I had several more severe allergic reactions that didn’t require hospitalization.

After seven years, my allergy list has grown substantially. My vision recovered. I have a tiny fuzzy vision spot in my left eye but a vision of 20/30. My gums are heavily scarred, and it took several years of slowly reintroducing foods and textures to eat comfortably again. I have some scarring marks on my back and neck. I had shingles three months after discharge. I’m grateful to have survived, but it wasn’t without trauma for myself and my loved ones.

I advocate for my SJS/TEN during my doctor and pharmacy visits. My pharmacist is someone I deeply trust as they understand what more doctors don’t with SJS. Get to know your pharmacist. They can be a great ally in navigating new medication options that are less likely to trigger SJS.

Thank you for the awareness and your campaign to educate on SJS.

 

SJS Warrior: Sebastian Failor

This is Sebastian, and he was diagnosed with SJS in February 2015. He had an ear infection, and they thought he had hand-foot-and-mouth disease because of the rash. The doctor put him on antibiotics and Tylenol. He developed a rash, and within 18 hours, we were in the ER. We spent a week up in the PICU, and he made a good recovery. At 10 years old, his eyesight is horrible, and his skin is sensitive. We always try to educate people now on the dangers of medications and to always read the medical pamphlet. Bash enjoys swimming, video games, basketball and math! Oh, and fireworks.

 

 

 

SJS Warrior: Jil Zaugg

I’m Jil, and 36 years old. Two years ago, I had TEN, and 90 % of my skin peeled off. It was the most terrifying experience of my life. I spent two months in hospital and had to learn everything from scratch (how to eat, how to walk). I’m happy I survived, but my health is still a work in progress. My eyes still need much care. I have had 10 operations in one year (eyes and esophagus). I’m happy I can still be there for my little daughter, who was one and a half when this nightmare happened to us. Before this happened to me, I had no idea that such a terrible disease existed!

 

 

 

SJS Warrior: Cole Beutenmiller

Cole was seven years old when he developed an infection in his toe. The pediatrician prescribed a generic form of Bactrim. Seven days later he developed a blistering rash which we first noticed on his ear before it began spreading rapidly. The emergency department confirmed a diagnosis of SJS. Cole became septic six days later while in the hospital. He fought for nearly a month before SJS took his life.

Cole was a kind and loving person who spread joy wherever he went. Cole was active in soccer and karate, and he loved watching shows like Ben Ten and Harry Potter. I was too young to have any memories of my brother, Cole, as he passed away when I was just two years old. The stories about him are the only memories I have. Even though I can’t remember him being here with me, he remains in my heart, and he will until the day we are reunited in heaven.

“Happiness can be found even in the darkest of times if one only remembers to turn on the light.”

Thank you to Cole’s little brother, Jake–now 15 years old–for sharing his story!

 

SJS Warrior: Karyl Bell

My name is Karyl Bell, and I am a survivor of SJS/TEN. Before October 2009, I was a normal teenager who played volleyball, danced and drag-raced. Then came the day that I started to have a severe allergic reaction that wouldn’t stop. I ended up staying in the hospital for 17 days, fighting for my life. This is a time that my family and friends will remember much better than me due to being in a medically induced coma. Most of my body was covered in blisters, including my mouth and my eyes. The doctors did everything they could during those 17 days in the hospital, but the threat of secondary infections from the hospital helped make the decision to go home and heal.

The healing journey is long, especially when the body is healing from all the burn and blister damage, dry eye and photophobia and the attempt to regain all normal functions. The damage on the outside was only what we could see, but there was also damage on the inside. The fear of medications and allergic reactions are real. The doctors said that the reaction was severe and that if it happened again to the extent of the reaction I had, I probably would not survive. 

With the help and love of family, I used dance as therapy to help with movement and strength. I used tutors and learned to live without the use of my eyes. Although I could see better in the dark, the light caused severe pain, and I couldn’t see at all.

I was fortunate enough to go to the Boston Foundation for Sight and receive PROSE devices, which help with photophobia, dry eyes and overall sight. The biggest blessing was meeting so many other kids who were fighting the same demons from the SJS. Knowing I wasn’t alone and sharing their life stories has helped tremendously and has built a bigger family than I could ever imagine. 

Every day is a blessing and a curse. I still battle pain and eyesight issues, but knowing I’m not alone makes every day worth it.

 

SJS Warrior: Penn Street

My Stevens-Johnson Syndrome story started when I was nine years old after I was bitten by a Western Diamond Back Rattlesnake. The doctors pumped my small body with antivenom, antibiotics, antiseizure medications, and fever-reducing medications. All were to help me fight for my life. However, one/some/all of the medications triggered SJS/TEN, and that would become a lifelong fight for me. 

For me, SJS/TEN stole my innocence and my childhood, but not my core. Overnight I went from being a healthy, happy tomboy trying to keep up with my seven older brothers to a sick, fragile kid who would spend thousands of hours at doctors, ERs, in surgeries, and feeling more at home in a hospital room than my own. However, my core was still deep inside, and as I found my new stride, it grew stronger and brighter. Life with fuzzy painful eyes, a racing heart, and struggles to catch my breath became parts of me, but not all of me. 

I found hope and strength in the closeness of my little sister, Sher-Bear. I found a bodyguard in my older brother, Tim, my forever Superman. The three of us were unstoppable, and they slowly brought me back from the fires of SJS/TEN.

I did not meet another blind/low-vision person until I was 13. I did not meet another SJS/TEN Warrior until I met Julie. I remember the moment like it was yesterday. Julie was just a kid, around eight or nine years old. I was in my early 30’s. It still brings up emotions now as I write this. I felt like I was meeting an angel. It was a huge mix of emotions. It also broke my heart that she had gone through and would continue to go through what I had. 

For those who have survived as warriors, I am proud to still stand with you. For those who lost the battle, you are and will remain warriors to me. For all the family and friends who stand beside us, you, too, are warriors for picking us up, holding us up, and loving us through the scars.

 

SJS Warrior: Julie McCawley

My name is Julie McCawley, and I’m a SJS Warrior. In 1994, at ten months old, I was diagnosed with pediatric epilepsy and put on phenobarbital. My mom was told the only side effect was drowsiness; little did she know drowsiness didn’t even scratch the surface of what was yet to come.

Shortly after starting the medication, I developed puffy, red eyes and blisters in my ears. My mother rushed me to the doctor, who said I had conjunctivitis and double ear infections. I was sent home with an antibiotic, and my mom was led to believe everything would be fine. The next day, my mom brought me back to the pediatrician with a fever and a blistering rash. They misdiagnosed me with chicken pox, and my condition worsened.

My mom brought me to the ER, where my blisters grew by the minute, and within days, I looked like I had been dipped in hot oil. Finally, on August 18, I was admitted to the hospital and diagnosed with SJS/TEN. My mom was relieved to have a diagnosis; however, our struggles were far from over.

I spent 27 days in the burn unit, being debrided daily and wrapped in bandages, given morphine for the pain, and placed on a feeding tube. My mom almost lost me several times as my lungs collapsed. There was even a night the doctors told my entire family to come up and say their goodbyes.

I spent my first birthday in the hospital. They examined my eyes and broke the news that I would be blind–just the thing every mother wants to hear on her baby’s first birthday. SJS left me with many side effects, including being blind in my right eye with low vision in my left, dry eye syndrome, photophobia and ear problems.

Over the years, I’ve had many eye surgeries, had my ears debrided frequently, and used more eye drops and ointment than I can count. I now wear scleral lenses to see and help with my photophobia. SJS/TEN has taken a lot from me, but has given me a lot, too. 

Two years after my SJS, my mom, Jean McCawley, founded the Stevens-Johnson Syndrome Foundation to spread SJS awareness and create a community so no one has to go through SJS alone. I’ve grown up advocating for SJS/TEN awareness by doing SJS walks, sharing my story and creating the SJS Kids site, among other things.

 

SJS Warrior: Timothy J. West

Hi, my name is Timothy. I had Stevens-Johnson Syndrome when I was four years old from an adverse reaction to amoxicillin/penicillin. I lost all my skin, teeth, and hair, and I had major cornea damage to my eyes. I nearly died multiple times, and I spent four and a half months in the hospital.

After I was cleared to leave,  I returned many times due to major internal and external damage. I had a feeding tube put in and removed, I had my gallbladder taken out, and, to be honest, I’m not even sure what else. I had many eye surgeries and skin graphs to help the skin heal. Currently, all of my body has returned, except for my vision. I have some sight remaining, but I’ve never let it stop me. 

I am now a disability and mental health advocate. I also help people with disabilities find employment, and I even have a podcast called My Blurred Opinion. Life isn’t perfect, but I do believe I’m a thriver and a survivor. I’m in a much better place in life. I feel if it wasn’t for my SJS experience, I don’t know who I would become as a man, and even though I wouldn’t want to do it again, I don’t regret it either.

 

SJS Warrior: Vijaya Lakshmi

My name is Vijaya, and I was diagnosed with SJS in 2012 when I was 18 years old. My SJS was a result of a prescription for a common mouth ulcer—a seemingly minor issue that led to an ordeal that changed my life.

My story began in a small village in Telangana, India. The unfamiliarity with my condition among those around me was daunting. Many in my community did not understand what was happening to me. I was met with confusion and, at times, judgment because my symptoms were severe and unsettling.

Initially, my body endured extreme distress. I lost my nails, my skin erupted into painful rashes, and my mouth became severely ulcerated. My eyes reddened, making it almost impossible to see, and the skin on my palms started to peel away. The agony of passing urine was nearly unbearable, and I found myself bedridden for months, unable to eat or drink properly due to the pain in my mouth.

During those early days, the prognosis seemed grim. Doctors advised that my life would never return to normal, casting doubt on my future. The uncertainty and fear were overwhelming. My studies were interrupted, and it appeared that my dreams and ambitions might be permanently derailed.

Despite these challenges, I found solace and strength in the support of my friends and family. Their unwavering encouragement played a crucial role in my recovery. With their help, I gradually began to rebuild my life.

I resumed my education and completed my Master of Business Administration. Over time, I returned to work and pursued a career in Human Resources. The path was not easy, but I was determined to prove that my condition did not define my future.

Today, I continue to live with the effects of SJS, particularly with dry eyes, which is a constant reminder of the condition. However, I have learned to manage these challenges and achieved a sense of normalcy. I am now a successful Human Resources professional and have found happiness in my personal life. I got married and am proud of the resilience and strength I have demonstrated throughout my journey.

To anyone currently battling SJS or any severe health condition, I want to offer a message of hope. While the road can be incredibly tough, perseverance and support from loved ones can lead to a brighter future. My experience has taught me that no matter how impossible the obstacles may seem, there is always a path forward.

I share my story to inspire others and bring awareness to the struggles those with SJS face. It is worth sharing if my journey can provide hope or encouragement to even one person.

 

SJS Warrior: Nariah Young

To the little girl who meant everything to us: We miss you more than anyone could ever imagine; we miss your soft kisses, your big, beautiful eyes and the warmth of your skin. Our sweet little girl: who would’ve thought you would leave us so soon. Our heart aches for you. We try to be as strong as we can, but we are so broken and lost without the little girl who meant everything to us. 

We love you so much, little girl. I loved sleeping with you in my arms and waking up to that beautiful face every morning. I always question why God had to take the little girl who meant everything away from me. I had to realize that he took you out of this cruel world because this world didn’t deserve someone as strong, loving, beautiful and kind as you were. To the little girl who meant everything to us, we love and miss you so much -mommy, daddy, big brother, honey and the rest of the family.

Our sweet baby, Nariah, was a true definition of a fighter. Nariah was born on August 4, 2022. She battled epilepsy since she was three months old. On July 7, 2023, Nariah was hospitalized for a common virus, and unfortunately, she had a TEN reaction. Nariah spent almost two months in the PICU fighting for her life until her fight was over on August 31, 2023.

 

SJS Warrior: Sabrina Brierton

My name is Sabrina. When I was six years old, I contracted Stevens-Johnson Syndrome from Children’s Motrin. 21 years later, I still have low vision and chronic issues, but I have accomplished so much! I have traveled to five countries (including 49/50 US states), have two kids as a single mom, and have enjoyed many jobs, including interior designer, travel content creator, and talent scout.

 

 

 

 

 

SJS Warrior: Amit Khatri

Hello. My name is Amit. I am an SJS survivor. I had SJS when I was 12 years old.

I spent seven days in the ICU and a month in the general hospital to recover. But, a month later realized, I had severe eye problems, corneal scars, dry eye, photophobia, and low vision. At one point in life, with a doctor’s advice, I went through a corneal transplant. And it was one of the biggest mistakes of my life. 

The first corneal transplant failed due to healing issues that are particular with SJS patients. Therefore, one after another, I had a total of seven corneal transplants done. To help improve the healing process, a bunch of mucus membrane surgeries were done, but none of them worked. In the end, I lost the eye, and the prosthetic eye replaced it. So currently, I have only one working eye, but it is not perfect. But what has helped a lot with one working eye is the BostonSight PROSE lens. With it, I completed my college and am currently working in the IT profession.

 

SJS Warrior: Shane Avila

My name is Shane Avila. I survived Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis, a life-threatening reaction to medication, when I was 21 months old. I was given Phenobarbital for seizures. On August 21, 2003, after two weeks of taking the medication, I developed flu-like symptoms, with rashes and conjunctivitis. My parents took me to the emergency twice; on the second trip, I was admitted to the pediatric care unit.

The doctors couldn’t tell what was going on with me because I was still having seizures. The nurse kept on giving me Phenobarbital and Dilantin around the clock. After half an hour of giving me the last dose that day, I was unrecognizable. Mom said I looked like I burned, and I stopped breathing because my airway was blocked.

Finally, they diagnosed me with SJS. I developed dime-size blisters, and my skin was sloughing off in sheets. I developed sepsis and was blood transfused four times; I had blood clots, and my eyes were completely shut. My lungs and all mucous membranes were affected. While in the PICU, I developed TEN and was burned almost 90%.

I was at the PICU for almost three weeks. I was in difficult intubation. The doctors told my parents that there was a chance I wouldn’t make it.

After PICU, I was transferred to the Burn Unit and treated as a burn patient for seven weeks. I fought and survived. I was very lucky, and I thank God every day I was too young to remember.

I am still suffering from the long-term effects of SJS; I have permanent damage to the surface of both eyes, the lid margin is extremely roughened and misdirected eyelashes scrape across the ocular surface, causing disabling eye pain and photophobia.

I am grateful that I can wear the PROSE device; I would be virtually nonfunctional without it. Aside from my eyes, I also have deep pigmentation on my skin, especially my face. I have Sicca Syndrome, my fingernails are damaged, and I need to see an ENT to clean my ears every six months.

I know SJS has changed my life completely. Sometimes, I wonder what my life would be like without it. But I am glad to be here with my loving family.

 

SJS Warrior: Simon-Marc Brendling

I’m Simon, a TEN survivor from Papua New Guinea. My first TEN symptoms emerged in late October 2022. I had been on flucloxacillin to treat an infected wound. About four days after beginning my course of fluclox, I began to break out in rashes starting from my forehead. After a few days, the rash began spreading to my torso and back. I went to a hospital in Port Moresby, where a very conscientious nurse said I probably had SJS/TEN and that I should go to Australia for treatment immediately. Crucially, my employer managed to arrange a medical evacuation the next day, on my birthday, 1 November. By then, my face started to blister. 

I was airlifted to Cairns, where my condition deteriorated rapidly. By 7 November, the blistering had spread to 90% of my body. I had to be intubated and was urgently transferred to the Royal Brisbane and Women’s Hospital in a critical condition. I remained intubated in the ICU for over 20 days under the care of ICU, Dermatology and Ophthalmology at Royal Brisbane. The doctors, nurses and staff there were simply wonderful. They provided me with the best care possible. Without them, I certainly would not have survived. I was then moved to the burns ward to continue my recovery, having gotten past the worst of TEN. 

I was discharged from hospital on 29 November. And continued my recovery as an outpatient with Physiotherapy. Thankfully, a follow-up visit to the Ophthalmology department showed that there was no damage to my eyes. 

I’m now back in PNG, living with my family. The support of my family and friends was a massive encouragement for me to continue fighting for my life. This photo was taken in January 2023, on my daughter’s first day of school–a moment I might have missed out on if things turned out differently during my battle with TEN.

SJS/TEN is a vicious condition. Although extremely rare, people should be aware of the potential risks of taking certain medications.

Finally, a big shout out to all survivors of this horrible disease. You’re all true warriors. Thoughts and prayers to those who have lost loved ones to SJS/TEN.

 

SJS Warrior: Oscar Ruiz

I’ve kept hope alive this long with SJS. Many doctors know of our diagnoses but don’t understand the pain and suffering they have caused. As a child at eight years old, I wouldn’t tell anyone. Now, it’s a scar for life that resembles courage, not something to be ashamed of.

 

 

 

 

 

 

SJS Warrior: Michele Barrett

My journey with SJS began in 2017. It’s believed to be from ibuprofen, but I was also prescribed tramadol and flexeral for several months for sciatica. I had no idea that a severe nosebleed would lead to any health issue, but less than a week and heading into all the Christmas holidays and stress, I was feeling ill with flu-like symptoms. On Jan 2nd, I ended up in the ER, and they prescribed pink eye meds and mouthwash for the sores. Had they not mentioned hand, foot and mouth disease to me, I would’ve never known what it was, but a few days later, I began to blister all over, mostly my hands and feet and then up my legs and upper thighs. I hadn’t eaten much in a long time and wasn’t thinking straight. I only cared that I must have this hand, foot and mouth, so I kept away from my family as much as I could. After it was apparent to my family that I was much worse, they dragged me back to the ER.

I spent a total of four days there with no one diagnosing me properly; in fact, I was in the infectious disease unit. It was not until word got out amongst the doctors that a dermatologist came in, and then they transferred me to a burn unit–in the middle of an ice storm. On the way, we went off the road. Gotta love it! Once at the burn unit, they took the utmost care of me. The nurse explained they were going to put a tube down my throat, and I’d probably be there for a month. I wasn’t going for that. I had already survived all these days, and I had turned the corner, so to speak, and literally turned the ambulance and survived, so I promised to drink as much as I could and start to eat. After four days there, I was released and a few months later returned to work, but my eyes didn’t fair too well once I started back on the computer and all the meds they had me on were done. 

I now have to wear PROSE devices to continue to protect my eyesight, and I thank God every day that your outreach to people suffering from this reached me because I was literally released with no information other than I looked good. It’s been many years, and I’ve seen dozens of specialists not only for my eyes but also for the debilitating pain. I’m just trying to be upbeat but still as scared as the day this decided to enter my life. If it wasn’t for all of you, I’d be totally alone in this. I don’t post a lot anymore; so much has been happening, and it all gets overwhelming. I thank you for giving us a voice: I hope someday mine matters and helps someone else.

 

SJS Warrior: Louis Chaix

At the age of six, I was diagnosed with TEN in Paris, France. After surviving this hardship, I had one goal: playing hockey in North America.

At age 14, I left my family and home country to pursue my passion and play hockey all over Canada and the US. I now play professionally in Europe.

In 2022, I was dealing with a lot of survivor’s guilt, and I needed to get involved with the SJS/TEN community. So, I decided that I was going to rollerblade across America to raise funds and awareness for research. I had the pleasure of working with Dr. Philips at Vanderbilt and a movie producer (Ryan James Delaney) who recorded my world record-setting journey across America on my skates! 2,902.41 miles on rollerblades in just 45 days, all for SJS/TEN. A documentary about this incredible journey will be released, which will help bring more awareness and attention to this terrible condition.

I believe anything is possible, and today, my mission is to show the world that we can all accomplish our wildest dreams.

If you want to learn more about my journey across America and keep up with the documentary, I invite you to follow my adventures on Instagram @louischaix.

I also want to thank the SJS/TEN community for your support; we are stronger together.

 

SJS Warrior: Maricris San Juan

Hi there! My name is Maricris, and I am from Marikina, Philippines. I was diagnosed with TEN a day before my birthday in January 2014.

When I was admitted on Dec. 23, 2013, due to Pneumonia and UTI, the doctors gave me Ciprofloxacin. After three days of taking the medicine, my condition worsened – I developed flu-like symptoms, rashes all over my body, conjunctivitis in both my eyes and mouth sores.

On Dec. 27, 2014, my sister decided to transfer me to a bigger hospital because my condition was getting worse. The doctors performed blood tests, x-rays, ultrasound and skin biopsy. I was brought to a burn unit because the blisters on my face down to my hip were so bad that I looked burned, and it was so painful to move. My mouth sores were so bad that I couldn’t even open my mouth to speak or eat. My lungs and all mucous membranes were affected. It was only after six days that I was diagnosed with TEN.

I had oxygen, was intubated and had a urinary bag. I had bandages on my face and body to help with the burn wounds. I had one blood transfusion. Several eye drops were given, 36-38 vials of IVIG, lots of antibiotics to treat pneumonia, UTI and bronchitis, and pain relievers were given three times a day before cleaning my burn wounds. I remained in the hospital for four months.

TEN took a massive chunk of my career life, and I still have to deal with everyday health issues. I am visually impaired, have photophobia, conjunctivitis, continuous allergies, asthma and pneumonia, and skin pigmentation on my face, chest, back and arms. Both my toenails and fingernails were damaged. I recently was diagnosed with aplastic anemia and bone marrow failure syndrome.

So, I told myself to live each day as if it were my last. I am grateful to have survived TEN and thankful to my family and friends for their moral support. 

To my fellow survivors and fighters, just continue to fight, be motivated and always pray to our Lord for guidance and strength. Cheers to life!

 

SJS Warrior: Valerie Chereskin

In 1990, I was excited about working for a new start-up technology company called Qualcomm. I was extremely busy and traveled a lot for the company, but kept getting recurring sore throats, probably from the travel. At the time, I was just given an antibiotic by the urgent care doctors, so I thought that was the cure. This time, the doctor decided to try something different, so she prescribed Septra antibiotics for 21 days. I had never taken Septra before but dutifully took the drug as prescribed. After about two weeks, I started to get a fever and called the doctor, but she said to keep taking the drug. Soon, my eyes started burning, and after two trips to the ER, I started to break out in blisters everywhere, inside and outside of my body. Soon, I was in intensive care and fighting for my life. The doctors said that since I was 35 years old and healthy, I survived better than most, so I am thankful for that.

While I was in the hospital, Qualcomm put me on disability leave, and after I had mostly recovered and went back to work, I was laid off. So that was another blow from which I thought I would not recover. But, I found a wonderful ophthalmologist who worked with me diligently to heal my damaged left eye and also get some tears flowing. I had a few surgeries on my tear ducts and lids but was able to get back to work and started my own public relations firm that I ran successfully for more than 25 years.

Since retiring, my eyes have gotten drier. I am now using the Scleral lens, which has been a lifesaver, so I can attend various rehearsals for my hobby as a flutist. What I learned in all of this is that you should never give up hope. Just when I was about to give up, some new treatment or a new doctor gave me something that helped improve my situation. Don’t give up hope, and live your life as best you can.

Thank you, SJS Foundation, for all you do!

 

SJS Warrior: Maria Dallavalle

My SJS nightmare started the day after Halloween of 2013. My husband went on a business trip to Florida, and I stayed home with the kids; they were five and nine years old. That night, my body was a little sore, and I had a bit of a headache, so I decided to take (ibuprofen) thinking I would wake up feeling better the next day.

The next day, I noticed some red dots on the palms of my hands, but I didn’t think about it, so I called my husband and told him about it. 

On Sunday, my feet started to swell, and more red dots appeared, so I went to the corner clinic to check it out. They said I had hand, foot and mouth disease, so I was prescribed antibiotics and more ibuprofen.

I kept my husband posted about my symptoms. On Monday, I had some blisters in my mouth, but they said it would get worse before it got better, so I thought that was normal.

On Tuesday morning, that’s when I thought something was not right. My face and eyes were so swollen I had huge blisters on the bottom of my feet that I couldn’t even walk. I called my mother-in-law, and she came and picked me up because I couldn’t put my feet on the ground. She took me to the corner clinic again, and this time, they told me to go to the ER asap. When I got there, I had blisters all over my body; nobody knew what was happening to me. My husband started to head home because he knew something was terribly wrong. 

It took them a while to get me diagnosed with Stevens-Johnson Syndrome. My husband and I had NEVER heard about SJS; no one had ever heard about it. They kept asking me what did I take. I didn’t even think about ibuprofen because I have had it other times before; how come an over-the-counter medication could have such harmful side effects.

At the ER, all the nurses did everything they could to lower my fever, which was 105F.

The next day, Wednesday, I was transferred to a burnt unit.

On Friday, they put me in an induced coma. I was in a coma in the ICU for 40 days. My family went through hell and back, not really knowing what Stevens-Johnson Syndrome was.

What do you mean by a severe allergic reaction to an over-the-counter medication?!?!

What do you mean it is a “rare” syndrome that burns you from the inside out?!?!

Ps: I have had ibuprofen other times before but have never been allergic to any medication or ibuprofen.

So, my husband started to research SJS when he discovered the Stevens-Jonhson Syndrome group on Facebook that was administered by Jean McCawley (she is an angel on earth). My husband would talk to her almost every day while I was in a coma. She would tell him everything that was going to happen, including losing my vision, which was a possibility because of SJS and why she knew so much. She went to hell with her baby daughter 20+ years ago when her daughter was misdiagnosed. The doctors kept sending them home, and she knew something was very odd about what they said about what her daughter had. That’s when she learned about SJS and its symptoms. So she FOUGHT, fought hard, and even went to the Montel Show to inform people about SJS, the first symptoms, and what you need to know about it. They say it’s rare, and that’s why many nurses and doctors don’t know immediately. It’s essential to know the symptoms because, with SJS, time is precious.

Jean McCawley was our savior, and she knows SO MUCH about it. 

I went from 50/50 to a 10% survival rate on some days. My skin (98%) peeled off my body, and I lost my nails, my eyebrows, and my eyelashes; the doctors shaved my hair because I had so many blisters on my head, and they even told my husband that my hair may never grow back. I was in a coma for 40 days, 40 days of hell for my husband, who saw everything I was going through. I was transformed, my skin was raw, I could get an infection any time, and the bedroom even started to smell bad.

At this time, the news spread among the Brazilian community, and many people came to the hospital and started to pray for me. I’m so incredibly grateful to them. 

After 40 days of hell, thank God for the doctors and ALL the nurses who were unbelievably incredibly amazing. I got out of the ICU. I went to an apartment, but it wasn’t over yet. I went through physical therapy to learn how to walk again, and I lost so much weight that the first time I saw myself in the mirror, I couldn’t recognize myself. At the same time, I was so thankful to be alive after knowing everything I had been through. I was so grateful to be with my family and kids again.

After leaving the hospital, my eyes started to deteriorate, and now I have to wear scleral lenses to see clearly. I met other SJS warriors, and they helped us tremendously with kind words and lots of information about SJS.

To my family, my kids, all the people who prayed for me, and to Jean McCawley and her daughter Julie, I’m so grateful for you. Thank you so much!

I try to spread the SJS word to everyone. EDUCATE BEFORE YOU MEDICATE!

 

SJS Warrior: Ian Guadarrama Gonzalez

Hello, I’m Ian, and at the age of five, I was diagnosed with Stevens-Johnson Syndrome. Today, I am 22 years old, and the fact that Stevens-Johnson gave me seems like a distant memory, almost as if it had not happened, because although at first it was complicated, little by little I got stronger and today I feel better than ever.

The Stevens-Johnson was something that changed my life forever, and honestly, despite everything, I don’t see it as a bad thing. I even think I’m grateful because if I hadn’t experienced that, I probably wouldn’t be who I am today. Maybe I wouldn’t think the way I think or I wouldn’t have lived what I’ve lived until now, who knows? The reality is that I am grateful for overcoming that battle; infinite thanks to the doctors and nurses and thanks to my family, who were always there for me every single day.

Stevens-Johnson taught me how fragile life can be and, therefore, how important it is to enjoy it day by day. I learned that many times it is not what happens to you, but rather, how you react or what you do with what happened to you. Stevens-Johnson Syndrome may have ended my life that day, but today, 17 years later, I can say that it began a very happy and wonderful life.

So thank you, Stevens-Johnson Syndrome; I am who I am today because of you.

Love, Ian

 

SJS Warrior: Heather Rose Kiss

Heather Rose passed away at the age of 3 years 9 months, on March 17, 2003, as a parent’s worst nightmare became a reality for Darlene and Andrew Kiss, formerly of Aberdeen, NJ. On that ill-fated day, the Kiss family was forced to say goodbye to their daughter, Heather Rose, who passed away after complications from two life-threatening diseases. Heather Rose suffered from Stevens-Johnson Syndrome, which later led to Toxic Epidermal Necrolysis. The cause of the two deadly diseases, according to the Kiss family, was severe side effects caused by an over-the-counter drug containing Ibuprofen.

Heather Rose developed a fever on March 1 and was given a dose of the medication. She received another dose on March 8, when another fever appeared, accompanied by itchy eyelids. A rash developed on her face the next day, and she was seen by her pediatrician the day after that.

On March 11, she was admitted to the pediatric intensive care unit at Monmouth Medical Center, Long Branch. She was eventually diagnosed with SJS. She experienced a rash, fever, swelling of the eyelids, and blisters in the mouth, nose, ear and genital area.

When SJS escalated to TEN, Heather Rose had to be transferred from Monmouth Medical Center to the burn unit at St. Barnabas Medical Center, Livingston, on March 12, where she was treated for burns on over 70 percent of her body, which eventually increased to over 92 percent of her body. Five days later, Heather Rose passed away “as a direct and proximate result of ingesting the drug” and suffering “serious painful and permanently disabling injuries.”

Heather was a loving, healthy, happy, beautiful and sweet little girl who enjoyed attending preschool in Aberdeen until her sudden and unexpected illness. She very much loved and was loved by her older brother Tyler, as well as her baby brother Trevor, who was only a week old when Heather was first admitted to the hospital. Sadly, Heather never got to meet her younger sister, Heidi Rose, who was named in honor of her older sister. Tyler, Trevor, Heidi, Andrew, Darlene, Heather’s grandparents, and her entire family love her so much and miss her every day!

Thank you, Darlene, for sharing Heather Rose’s story.

 

SJS Warrior: Lydia

Hi, my name is Lydia, and I am an SJS warrior. I had SJS 52 years ago–I was three. I remember being carried into a hospital and spending a few weeks in isolation. Everyone who came into my room wore masks except my Dad!

I remember feeling very cross because I was in a cot, and at home, I was in a big girl’s bed. My mum said that I had blisters everywhere, inside and out, my hair had fallen out, and I couldn’t pull myself up – so all of my strength had gone. I had ice cream for food! It took me ages to like ice cream again. Everything was written up in The Lancet, a medical journal. No one really knew why I had SJS. It could have resulted from smelling the chemicals from my brother’s enamel kits, but no one knows for sure. 

I had a few operations on my eyes and teeth, but I fully recovered–or so I thought!

I had what I thought was terrible hay fever when I was 28, but when I was sent to a consultant, he immediately started talking about SJS. A corneal scrape sorted things out, again, more articles for the research papers, and then I carried on!

The same symptoms occurred again when I was in my late 40s. I saw the same consultant who was optimistic about the results of a corneal scrape. Sadly, age, scarring, and stress all contributed to a complete flare-up! Blisters appeared, lots of eye problems, very poorly, and plenty of time in a hospital with multiple eye surgeries.

Roll on 7 years…

It’s been really rough! I have had lots of corneal surgeries–on both eyes, with 25% vision left in my left eye and almost blind in my right eye. I’m terribly photophobic. I suffer from dry eye and pressure issues. I have good hours and really bad/painful hours. No two days are the same. I felt utter grief and sadness when I was told that I would eventually go blind.

I’ve lost a lot of teeth, my muscles and bones hurt, and I get really exhausted.

What gets me through?

My wonderful family, I have four children and six grandchildren! I have an amazing husband! I became a teacher but sadly couldn’t continue.

I’m now an artist, @nearlyblindartist, and I’m sure I’ll reinvent myself when my eyes completely give out. And it’s stories like yours that keep my spirits up, belonging to a rare and brave tribe of people who do amazing things despite their adversities.

So thank you, keep posting, keep raising awareness and keep going forward. Xxx

 

SJS Warrior: Megan Kratoska

Megan had her first known seizure on September 20, 2001.  She was prescribed phenobarbital on September 28. On Sunday, October 6, she woke us early with an itch that appeared like bug bites on her ankles, but we knew they were not. The appearance quickly changed and spread throughout her body. By mid-afternoon, I had called my neighbor, who worked for a dermatology drug company, to look at her.  It was not hives or chicken pox, but she was unsure of what it was.

I called Megan’s doctor, who recognized that she was having an allergic reaction to the phenobarbital. Stop giving it to her; bring her in on Monday.

On Monday, her body was 50% red and welted. Her doctor was shocked at how fast her appearance changed compared to my description the day before (and so was I). Ride it out as there was nothing she could give her to counter the reaction.

On Tuesday, Megan’s eyes were turning red, the itching was substantially worse, and she was now 80% red and welted. We went back to the doctor. After several trips in and out of the room and looking at her, he came back and said, “She has what’s called Stevens-Johnson Syndrome and needs to be admitted.” I did not know what this meant, forever grateful he did, and I took her in.

After 24 hours of being at the hospital and having met with her amazing dermatologist, I was told what SJS was, that Megan would end up on a feeding tube, she would need morphine, that she would look like a burn victim, that there was a 15% risk of death, an equal risk of blindness, and that the ICU was aware of her and ready for her should she need them. We met the ophthalmology docs who would monitor her eyes. We continued to meet with neurology to decide the next steps to control her seizures.

Megan was a thumb sucker and stopped due to the blistering inside of her mouth, and that feeding tube that was mentioned became a reality. Morphine soon followed. Her eyes were constantly treated with an ointment, and she was a champ in allowing us to do so. She was given IVIG and deliberately not wrapped/grafted like a burn victim in hopes that the combo would help her recover faster.

Thanks to the insight and wisdom of one of her nurses, she recognized that Megan needed sleep and took liberties to not wake her for vitals one evening. From that night on, orders were in place, provided she was stable throughout the day, solid sleep was allowed overnight, and no prods and pokes took place. I truly believe that helped Megan’s recovery to be faster than expected. The day we were told Megan was turning the corner and was beginning to recover seemed like a miracle.

Fortunately, Megan never made it to the ICU and was discharged on October 20, the day before her fourth birthday. I have no other pics of her from that horrible time because I never wanted to remember her that way should she not have survived.

Today Megan deals with the horrible dry eyes as one does after SJS, but she went on to have successful brain surgery, graduated cum laude from college, and enjoys her free time with our horses. I am grateful that she only has vague memories of what she went through with SJS.

Thanks to Julie and her mom for all of the work they do for all of us who have dealt with this horrible disease.