About
SJS/TEN International Alliance
STIA was created by myself (with the input of many) when a gap was identified in communication and education of SJS/TEN.
Let me introduce myself. My name is Angie Lowe and I am a SJS SURVIVOR! I developed SJS in September of 2015 after being prescribed Sulfasalazine for suspected psoriatic arthritis. Twelve days after starting the medication I began to develop symptoms: intense itching, a painful rash, burning red eyes and painful urinating. This is my story...
I was born in Ontario and moved to a small town in Saskatchewan where I live with my husband and two hilarious young boys. By small town, I mean we have a population of approximately 250, no stop lights and are about a 2 hour drive from the nearest Walmart... small. We are fortunate though to have school, grocery store and a Primary Care Clinic with a Physician and Nurse Practitioner.
One benefit of living in a small town is that 4 days after my symptoms began and I called my Dr. needing an appointment and was in to see him immediately. My Dr. is a brilliant man, who seems to know a bit about everything. This was evident when I sat in his office and he saw my red runny eyes and rash. Knowing I recently started a new medication, he told me about "this thing" called Stevens-Johnson Syndrome and it's caused by a reaction to a medication. He said it causes your skin to rash then slough off and it was very serious. Not wanting to jump to worse case scenarios, we discussed discontinuing my meds (which I had already), taking Benadryl and watching for worsening symptoms. By the morning, my rash had become worse, my eyes and face were swollen and my mouth began to get a swollen feeling. I drove to our closest hospital, 45 minutes away where the nurses administered IV meds until the Dr. could arrive. By the time he arrived, ulcers had formed on my mucus membranes and the pain and rash worsened. He immediately recognized the symptoms of SJS and I was transported by ambulance to the city hospital, and additional hour away.
The battle begins
Upon arrival, I was seen by two different residents. One told me I did not have SJS as it doesn't affect the palms of hand and soles of feet, which the rash had now spread to. Hours later, the second resident agree I did not have SJS and I simply had a severe form of psoriasis. Worsening symptoms throughout the night had me in tears from the extreme pain. My eyes went from burning to blurry and I could only see shapes. In morning at the nurses shift change, I demanded to be seen by a doctor as I was now unable to see. I was then released from Emergency and admitted. At last a resident Ophthalmologist examined me. After consultation with the head Ophthalmologist, they confirmed I did in fact have SJS and I was rapidle losing my sight. I required emergency surgery or I would be blind in 6 hours. S.C.A.R.Y.!
The surgery was successful and I remained in hospital for 12 days where my eyes healed but remained virtually blind the entire time and my skin, blisters and ulcers were treated. Numerous hospital staff visited me to see SJS first hand as they had never seen it before and had only learned about it in school. One even took my picture and was going to use my story at her next "Grand Circle". I was not blessed to be going thru such an illness, but a strange scene of peace came upon me knowing I was helping people learn something new. They would now have experience should another patient present with the same symptoms. They might now be better prepared to ensure someone is not misdiagnosed or overlooked possibly leading them to succumb to the monster we call SJS/TEN.
12 days after entering the hospital, I was being sent home. I had survived the toughest part! Or had I? The months that followed would prove to be some of my hardest struggle. Throughout my entire hospital stay, no one told my family or myself what EXACTLY SJS was and how my life would now be affected. Sure we knew I had a reaction to a medication, we knew from experienced what the symptoms are, but why did this happen? How did this happen? What happens now? Is there a Dr. who specializes in SJS? Who do I see if I have issues again? Can this come back? And many more. So, we took to the internet to find the answers. The INTERNET! Because no one seemed to have the answers I was needing. I made follow-up appointments with the Dr.'s of the different specialties that helped treat me; dermatology, gynecology and ophthalmology, rheumatology, an allergist and my family Dr. (whom we learnt a lot thru this process together). But the helplessness and scene of loneliness remained. No one doctor could answer my questions regarding SJS except for the ones specific to their particular discipline. One Dr. actually read to me the definition of SJS from a medical dictionary. That's ALL he was able to offer me! I had no idea how my life would look now. I had no idea what list of medications (other than Sulfasalazine) I was to avoid. Can I safety go to the over-the-counter medication area of a drug store and grab anything I needed? Was my offending drug, sulfa, the same as sulfites? Because by golly, I didn't wanna give up my wine! The internet proved only OK for providing answers, and you can only trust the internet so much.
I came across a contact for the Drug Sensitivity Clinic in Toronto. From there I was able to have a teleconference with one of the Dr.'s who answered some of my questions. She told me things I needed to hear. She told me things I didn't want to hear. Things I wasn't READY to hear. A year out, I was still having nightmares about SJS and my hospital stay. I was still fearful to try new food and drink, to change make-up brands or take ANY medication. I was still crying and frustrated and panicked and scared. I heard what this Dr. from Toronto was telling me but some of it I didn't like. For instance, I told her I was scared to take new medications. What she told me, infuriated me. She said, and I'll paraphrase, "This is like a car crash. Just because you get in a car accident doesn't mean you will never get in a car again right? So just because one medication did this to you doesn't mean you should never take meds again. You are just more cautions now. You know what to look for in case anything happens again. " At the time, I was in much too fragile a state to accept that analogy. But as the years have gone on, I now get it. And she's right! I now know that before I take new medications, I remind the prescribing Dr. I can't take sulfa drugs. I remind the pharmacist I can't take sulfa drugs. And I look it up online. I am responsible for my health. Recognizing that has given me back some of the control SJS took from me.
So now what?
In light of my renewed scene of control, I continued my yearning for SJS information and support. I came across the SJS Canada group where I flew to Ontario to attend a SJS Information Night in Toronto. I met some inspirationally brave survivors, was able to get even more questions answered by a brilliant Dr. who has years of experience with SJS/TEN and became encouraged to begin spreading awareness.
I feel extremely fortunate I was invited to speak at the 2019 SJS/TEN Conference: From Science to Translation, in Vancouver. Talk about an emotionally charged experience! There were so many ups and downs. I was thrilled to meet so many other survivors and hear their stories. It further reinforced to me just how fortunate I was to be diagnosed so quickly and have my outcome be as positive as it has been. I received closure to my pain by learning from highly experienced doctors and clinicians. These doctors did not rush our questions away. They were extremely personable, patient and understanding. Not only were us survivors there to learn, but the doctors wanted to learn from US too! I took more than I ever could have imagined from this conference, and the friendships and relationships I formed are special and invaluable.
My biggest takeaway from speaking to other survivors and families was there are not enough resources for patients, survivors and families. There are far too many misdiagnosis' and too many centers with doctors who do not have experience with SJS/TEN. These doctors try their best to assist their patients but in some cases they just aren't equipped with the knowledge of how to handle this rare disorder. And the vast majority of survivors are not provided with any information leaving the hospital on their next steps. How can it be that we are all so ill-informed after such an agonizing experience?
This conference house so much intellect and so many brave survivors and family members in one room. The overwhelming majority agreed there isn't enough collaboration, standards, communication and information of SJS/TEN for patients, families and survivors. My mind could not be cleared of this realization.
How do we change this?
We change this, by making the change! By informing hospitals, burn units and doctors. By providing information to survivors. It was then that the idea of a "One Stop Shop" of all things SJS/TEN came to me. We need a central hub, a place where anyone wanting to know more, can go. Residents, clinicians, doctors, students, patients, survivors, family, supporters...anyone! This place should be international to be accessible to everyone. It should provide access to accurate information and supports. A place to give guidance when it seems there isn't any. A place to put a stop to the uncertainties of those who have endured the worst. From all this, came
STIA - SJS/TEN International Alliance
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It can't go without being said...
To those who helped make this alliance a reality, THANK YOU! To whose who were by my side during my illness and healing, THANK YOU! To those who listened while I vented and cried, THANK YOU! To those who provided me with the tools I needed to move past the scariness and uncertainty of my healing, THANK YOU!
