Stevens Johnson Syndrome

Learn the warning signs of SJS/TEN at sjsupport.org.

SJS doesn’t discriminate! It can happen to anyone, any where, at any time. Learn more about SJS at sjsupport.org.

Don't miss the 10th annual Loyola SJS Symposium! Join Dr. Charles Bouchard for the live virtual event on August 21, from 7 - 9 P.M. CST, to learn about SJS/TEN updates in management and access to care. Register at https://bit.ly/loyola-biotissue.

August is SJS/TEN Awareness Month. Please help spread SJS awareness by sharing your SJS warrior story! Email your story of 400 words or less and photo to [email protected] to join the campaign.

Not all warriors beat SJS/TEN. Families and friends are often left heart broken. We are here to help https://www.facebook.com/StevensJohnsonSyndromeGriefSupport?mibextid=LQQJ4d

Over the counter children’s ibuprofen and acetaminophen have been known to cause SJS/TEN. Please learn the warning signs at https://sjsupport.org/?page_id=2551.

Run/walk/bike at your convenience, any time, anywhere, between August 14-16, 2024.

Celebrate your accomplishment by sharing on social media!

Donations to the Stevens-Johnson Syndrome Foundation can be made through Network for Good

https://www.networkforgood.org/donation/ExpressDonation.aspx?ORGID2=841461593&vlrStratCode=HPrskhdqxLfvnJK%2b7XUDfQa3ULG4d37bxeuMfEXb2qUjrJzKMjtBclpCwQETQVNc

Spread the word about SJS! Don’t you wish someone would have warned you?

Many SJS patients suffer ocular involvement leaving them with dry eye syndrome, light sensitivity and often permanent blindness.

Family members of SJS/TEN patients never stop worrying and praying that their loved one never suffers this nightmare again.

Thank you Paul Anderson, for sharing your speech from The University of Pennsylvania’s Pharmacogenomics Conference on 6/20/2024 about Angela’s life and tragic death from SJS/TEN.

https://youtu.be/BS6gSVh4Qdo?si=LYxSVX5n3cmTYTZq

ClinPGx Meeting 2024 Day 1 10 00 10 30 Patient’s Representative View Steve

Please help us spread the word about Stevens-Johnson Syndrome!

Patients are often misdiagnosed with chicken pox, measles, or other illnesses several times before receiving a diagnosis of SJS/TEN. Know the warning signs of SJS: https://sjsupport.org/wp-content/uploads/2023/08/SJS-Fact-Sheet-2023.pdf.

Let’s spread to the moon and back!

Did you know even pets can get SJS/TEN? The SJS Foundation has had reports of a cat and a german shepherd with TEN. Here is an article about a bulldog with TEN: https://www.frontiersin.org/journals/veterinary-science/articles/10.3389/fvets.2021.728901/full.

In line with our goal to prompt medical research, the SJS Foundation has worked with Dr. Phillips at the Vanderbilt University Medical Center
for many years to move towards a future with better prevention, identification and treatment plans for SJS/TEN. To learn how to participate in SJS research, visit https://sjsupport.org/?page_id=1997.

“I’m like a phoenix. I rise from the ashes.” - Bess Myerson

Did you know Stevens-Johnson Syndrome can be caused by any medication, including over-the-counter medications such as Ibuprofen? To learn more about SJS, check out our factsheet, https://sjsupport.org/wp-content/uploads/2023/08/SJS-Fact-Sheet-2023.pdf.

The SJS Foundation has been lighting the way to SJS awareness for 28 years! Our goal is to make the public aware of adverse reactions, so that a quick diagnosis may be made and the offending drug stopped as soon as possible. To learn more visit https://sjsupport.org/?page_id=428.

Know the signs of

Recognition of the early symptoms of SJS and prompt medical attention are the most invaluable tools in minimizing the possible long-term effects of SJS. To learn more about SJS, visit sjsupport.org.

Stevens-Johnson Syndrome is a severe adverse reaction that burns the body from the inside out and can happen to anyone at any time. To learn more about SJS, visit sjsupport.org.

August is Stevens-Johnson Syndrome Awareness Month! This August, let's spread around the globe.

You can spread SJS Awareness by:
* Joining our SJS Warrior Campaign.
* Sharing informational posts about SJS.
* Passing the SJS ribbon.
* Wearing blue on August 18th.

Thank you Jeri-Ann Marie for requesting Massachusetts proclamation declaring August 2024 SJS Awareness month!

Meet Katie!

Meet SJS Warrior Katie!

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.

📣 Are you or is someone you love a SJS Warrior? Then we want to hear from you! Email your photo and SJS story to [email protected] to be featured in our SJS Warrior campaign.

Meet Michael!

Meet SJS Warrior Michael!

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.

📣 Are you or is someone you love a SJS Warrior? Then we want to hear from you! Email your photo and SJS story to [email protected] to be featured in our SJS Warrior campaign.

Meet Erica!

Meet SJS Warrior Erica!

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!

📣 Are you or is someone you love a SJS Warrior? Then we want to hear from you! Email your photo and SJS story to [email protected] to be featured in our SJS Warrior campaign.

Meet Jessie!

Meet SJS Warrior Jessie!

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.

📣 Are you a SJS Warrior? Email your photo and story to [email protected] to be featured in our campaign.

Meet Zoe!

Meet SJS Warrior Zoe!

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.

📣 Are you or is someone you love a SJS Warrior? Then we want to hear from you! Email your photo and SJS story to [email protected] to be featured in our SJS Warrior campaign.