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Meet Julie who miraculously survived SJS/TEN, not once but twice. With the help of her supportive mother Jean, Julie now uses her story to raise awareness, support and inspire other survivors. See video below. https://youtu.be/-Znz5lJTMzM?si=5Kjmvwj7BIbh0AWy&t=79 Her story begins at 1:19 and ends at 23:37.

https://youtu.be/_j3UWsEb5bM

https://youtu.be/rocX38HOUjE

Attention SJS survivors & care supporters Coming winter 2024 : to secure your spot Email: info@sjscanada.org Our FREE four weeks supportive counselling/educational session in collaboration with Elpizo Counselling Service is back.

The month of August is Stevens Johnson Syndrome Awareness Month in the USA. We wish to join our allies and combine our voices to spread awareness here in Canada. Join us and show your support by: Find and follow us on on Facebook. Like, repost, and share our weekly posts. Wear blue on August 18th, the official SJS awareness colour. Share your comments and photos wearing blue on our Facebook page in support of SJS Awareness Month. Tell us your SJS/TEN story

I had a bacterial infection in 2005. After 13 days of taking antibiotics, I developed a lot of bumps on my body, my face swelled up, my eyes and throat started to feel inflamed and irritated. I went to the doctor and was told I had an eye infection and was given sulfa (an eye drop) in addition to the oral sulfa antibiotics that I was already taking. Soon the skin around my face started peeling so I took a picture and sent it to my dad and brother. My brother’s pharmacist friend told him I was having a severe allergic reaction to the medication while my dad and I read up on the side effects of the antibiotics I was taking. By the time I was admitted to the hospital, my eyes were swelled shut, my skin was peeling, and raw from my scalp to torso. At the hospital, doctors stitched amniotic membrane to my eyes in the hopes that I would not lose my vision. I stayed in the hospital for 13 days. After one month they removed the stitches from my eyes but although I was able to see, I could hardly open them since they had become extremely photophobic. In 2012, I met Dr. Chiu who introduced me to PROSE contact lens which allowed me to open my eyes more and drastically reduced the photosensitivity. These lenses have also helped to decrease the irritation and redness of my eyes. Furthermore, I had cataract surgery for both my eyes. My skin has healed although my nailbeds are damaged and fragile. As part of my recovery, I started to hike and became a runner. I was able to train and run many organized races including two marathons. In June 2020, I joined the SJS Canada group and have been delighted by the support that the group provides for each other. Sonia’s care and attention to the members of this group is greatly appreciated, and her leadership has helped gain awareness and momentum for the SJS community. It has been a pleasure to be a part of this group.

Thank you to everyone who joined us for our AGM in May Below are some images from the event! Photos of our 2018 Annual General Meeting

SJS Founder, Sonia Whyte-Croasdaile was featured on Toronto’s news and entertainment show, The Scoop. Sonia took the liberty to help describe the complexities of SJS/TENS as a survivor and advocate to the shows audience. Sonia also highlighted a fund raiser and line up for the event.

Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) represent different degrees of a severe, acute, life-threatening mucocutaneous reaction resulting mainly from drugs. Both are considered a medical emergency that requires hospitalization and management of patients is usually provided in intensive care units or burn centers. By current convention, the following terminology is used: the term SJS is used when the disease involves less than 10% of the total body surface area; and the term TEN is used when the disease involves more than 30% of the body surface area. Medications are the major precipitating cause and no specific treatment modality has been proven effective. Recovery can take weeks to months, and there are numerous long-term sequelae. The recovery journey may look different for each survivor: some are able to resume their normal duties example work, with some modifications, while others are unable to return to work or their normal duties. Many survivors may suffer from psychological complications and low health related quality of life, and require long-term medical follow up. We are here to support you, you DO NOT have to take this journey alone!

I was diagnosed with TEN in early 2016 when I was 28 years old. I was 5th grade teacher at the time, I loved hiking and bike riding, and I was very active in my school community and my church. Initial Symptoms I was taking a combination of prescription medications to help regulate my mood when I started having several eye issues. They became red, itchy, and felt as if they were burning. I went to an eye doctor who prescribed eye drops. My eyes didn’t get any better, and I started to develop flu-like symptoms. I also noticed numerous red spots that covered my arms. Painful blisters started to appear on my lips and inside my mouth, which made it unbearable to eat. In the Burn Unit After a few days in the ER, I was transported to a burn ICU, where I stayed for three weeks. I was essentially unconscious for the first two weeks, and when I awoke the third week, I saw my body wrapped in bandages from head to toe, completely covered in second- and third-degree burns. I was told I had survived Toxic Epidermal Necrolysis and that over 85% of my epidermis and all of my mucous membranes were affected. Recovery Upon discharge from the burn unit, I was assured that everything should be fine moving forward. But within the following days, weeks, and months, it was very clear that things were not fine. My entire epidermis continued to shed like the skin of a snake. My lips and other mucous membranes were patches of raw, bloodied scabs. Chunks of skin fell from my eyelids, ears, mouth, scalp, hair, and every single fingernail and toenail sloughed from my body. I remember just sitting and crying on the bathroom floor staring at a chunk of skin in the shape of part of my foot that had just sloughed off. Life After TEN After five years, I am still constantly reminded of my TEN sequelae, which includes complications with my nails, skin, eyes, esophageal tract, vulva, psychological well-being, and general activities of daily living. Most of my fingernails and toenails are still missing, as the nail matrices were destroyed. The nailbeds are extremely sensitive, and the little slivers of nails that have grown back can be very painful, especially when they get caught on things. Raised scarring and new moles from the burns developed on my back, and the scarring on my face required special laser treatment. While I am grateful to have my vision intact, there are several other ocular complications, such as eyelashes growing in the wrong place and in the wrong direction, extreme dryness and redness, pain, and severe meibomian gland dropout, all of which require ongoing procedures and treatments. I have found some relief through wearing custom Prose lenses and by having the lashes either pulled manually or electro-epilated. Just managing my eyes adds about two hours to my daily routine. Another impact of TEN was salivary gland damage, which has caused increased dryness in my mouth, and requires me to frequently clear thick mucus from my throat. TEN also caused vulvar sequelae, which requires ongoing pelvic physical therapy and the use of various topical creams. These complications also impact relations with my husband. During the first four years after TEN, the vulva was so sensitive that I was unable to ride a bike or wear certain pants due to the large seams in the pelvic region. I am still unable to use tampons during my menstrual cycle. Support for Survivors Ultimately, the psychological and emotional impact of this trauma has proved to be the most challenging aspect. For those coping with the effects of SJS or TEN, be sure to find a support group! I attended an international SJS/TEN conference, where I networked with medical professionals, met other survivors, and found an SJS/TEN support group, which is making an incredible difference in my journey of healing.

IT’S TROUBLING TIMES WHEN THE SOLUTION BECOMES THE PROBLEM………. My name is Jane Grady and I’m an SJS/TEN survivor. I was prescribed a medication for seizures. Following the prescription directions, I took ½ tablet in the morning and ½ tablet in the evening from January 9 through to about January 17, 2014. By day 6 or 7 I noticed a rash developing on my skin. I tried phoning the specialist who prescribed the medication. My first phone call was a busy signal. I left two messages explaining my concern that something was desperately wrong with my reaction to this medication. When I finally connected with the secretary, she informed me to continue taking the medication. I expressed my concerns over my state of health due to taking this drug. The specialist never phoned back or made any attempt to contact me. I went to my family doctor on January 18th and he asked, “Do you have a rash on your mid-section and back?” I did. I explained the something was very wrong with my reaction to this medication. Further, I had been trying to contact the original doctor who prescribed the medication and I could not reach him. I asked my family doctor to please talk to him and try to help find out what is going on with the medication. He refused to talk or consult with other doctors. I was told by my family doctor to continue taking my medication until it was finished. That night, I phoned an ambulance. It was after 8 pm when they arrived. I was having difficulty thinking and was getting worse by the hour. I chose to stop taking the medication by day 7. The local rural hospitals were closed by 8 pm. I was asked if I wanted to go to Truro or Amherst. I was not capable of making a decision as I remember not being able to sort out the information I was being asked. The medication had completely frozen my thoughts. I was unable to give them an answer, so I was asked to sign a release form and they left even though they could see I was clearly very sick. They took my vitals and I know they would not have been normal or within the realms of normal. They left. The next morning, I drove myself to the hospital in the small village of Tatamagouche 30 km away. I was very sick. I was sent by ambulance to ICU QE11 Halifax by noon. I was in ICU for several days, then moved to a private room due to my immune system being compromised. During my stay in the hospital, I gave permission to allow residents, qualified doctors and nurses to visit me to “look and see”. As it was explained, some healthcare providers have worked there 30 years and had never experienced SJS overlapping TENS. As time dragged on, my skin blistered and peeled off. My mouth and nose were crusted and sore. Swallowing was difficult. Mashed foods and liquids were my diet. I had lost sense of taste and smell and my tongue was swollen with deep lesions on the upper surface. It was extremely painful. I had creams applied, skin wrapped and was given an air bed. My lady parts were also compromised with blisters. My whole body was swollen. When I got out of hospital my skin continued to peel off, my toenails and fingernails fell off. Swallowing food is still something of concern when eating. Hot food and drinks are difficult to consume due to the sensitivity of my mouth. Sores are constantly appearing inside my mouth. My nose constantly drips and is often stuffed up and my lips get very sore. I have frequent ear aches and water retention in my ears after swimming and showering. My hair is constantly falling out. Although somehow, I still seem to have a decent hair volume. My fingernails and toenails are painful. The soreness never goes away. Any sort of insect bite or sting tends to bother me more than it did in the past. I must keep my nails short as that helps subside the pain. My toenails seem to want to grow into the sides of my toes. My fingers are also sore, giving me an almost numb feeling. My eyes are constantly sore, my skin still very sensitive. I must wear full sunscreen, sunglasses, and UV filter clothing and hat to go outside and while swimming and driving in the car. I suffer from constant inner chills and will have days when this affects me to the extreme. During those episodes, I go to bed and put my electric blanket on to try and bring my body temperature up. I find it very difficult to function when this happens. I also have times of extreme tiredness at which time I need to lie down and sleep for several hours during the day. I still do my favourite things and basic survival day to day tasks around the house. I bake, grow a veggie garden, cook my meals and work on my Illustrated and Visual Artwork. I have been very lucky to be able to and remain determined to continue to make new art. I swim almost every day in the summer to early fall in the Northumberland Strait NS on my beach. I walk my little dog which I got just 5 months after coming out of hospital. When I was in hospital, I asked to get help to get up and walk despite my tender and extremely swollen feet and body. The first time the physio held me, I could not make it to the door. Gradually, I was able to walk with the help of my cane around the nurses’ station. I am a determined person and make myself push through barriers. My parents overcame many setbacks and trauma from serving in the military and living through war and economic depression. I suppose this has stayed with me. What I find difficult at this time is the lack of knowledge about SJS/TEN. This lack of knowledge and communication between pharmacists filling prescriptions, nurses looking after you in hospital or delays in diagnosis made by family doctors and specialists. There seems to be the assumption that once you have had this syndrome that you are fine and there is no need to use precaution with taking medicines after the fact. This leads to the misconception that any side effects that I described above are, as I have been told “all in my head”. Therefore, the only solution is to see a psychiatrist. In my view, this is unacceptable. Getting help with counselling to help alleviate fears and anxiety seems to be an ongoing concern with most that have experienced this syndrome. Each person is different in culture, mental strength, immediate surrounding support, other circumstances, along with the degree of the physical effects. I greatly encourage family doctors to have more training and greater awareness that may help patients find better resources to deal with their immediate SJS/TEN symptoms. Follow up appointments with the doctors that treated the SJS/TEN patients in hospital may be one solution to help provide more consistent care with on going out patient services. A greater awareness on prescribing medications is needed. Making sure the pharmaceutical companies give proper explanations as to what the medications actually can do or the possible actual reactions instead of describing it in vague terms such as, “it may give a rash on the torso and back. If this happens go to emergency”. If that is the only information the doctors and pharmacist are getting trained with, it leaves them in a compromised position. My overall experience in the care and treatment I received at the hospital was greatly appreciated. I am now a part of a group of global survivors who use ZOOM to talk, email, encourage and support each other on a regular basis. We have guest speakers that share with us a wealth of support and knowledge along with giving us the chance to ask questions. We have been privileged to have doctors and residents join our group and share their expertise. They are greatly valued. Thank you.

My name is Jennifer Lane. I have just turned 48, and this is my SJS/Ten story. It all started on August 1, 2017. I was in Clear Lane, MB with my family, and had just come home from a lovely day on the boat. Right away, I noticed redness on my chest, and was kicking myself for not applying more sunscreen. Soon, the burn started to itch. I had experienced minor allergic reactions in the past, so I assumed I was having some type of allergy to the sunburn. The itch became so unbearable that I consulted the doctor in a nearby town, and then went to the emergency department in the city of Brandon. No one seemed to know what was wrong with me. In addition, I felt feverish and utterly lethargic. I woke up the next day with large teardrop shaped sack-like blisters on my chest and back. My dad immediately decided I needed to go to the hospital in Regina. I do not remember the 4-hour drive home, but I do vividly remember being extremely thirsty. Upon arriving at the Pasqua Hospital in Regina, SK, I was extremely lucky as the doctor on call immediately diagnosed me with SJS/TEN. Also, the ophthalmologist recognized the severity of my illness, and inserted amniotic membranes in my eyes. What was to follow was the biggest challenge of my lifetime up to that point. I was placed in intensive care with severe burns on my chest, back, nose, lips and upper arms. I was given powerful drugs to combat the extreme pain of my burns. When my lungs became overwhelmed, I was put on life support. When I was finally able to breathe again on my own, I had a feeding tube. At that time, I was experiencing a lot of pain from the dressing changes. I was blind for two weeks waiting for the amniotic membranes to be removed. In that time, I was confused and depressed. I was just so incredibly sick and in pain, and I could not even recognize myself. Once the membranes were removed and I could see again, they eventually removed the feeding tube, and I was sent home, more for my mental health than anything else. However, I was still required to get frequent blood tests, and my skin was extremely yellow due to issues with my liver. One day, not long after I was discharged from the hospital, I received a call from my gastroenterologist that my liver was not functioning well, and I needed to go back to the hospital. I was so depressed about the prospect of another hospital stay, but I had no choice. I was given a liver biopsy which came back normal, but they still found a need to do a second one which was done incorrectly. This resulted in an extremely large hematoma in my abdomen. I went on to endure insertions of four different drains on my sides, making me feel utterly helpless and terrified. Despite my normal liver biopsy results, my liver was still not functioning well, and I was diagnosed with drug induced hepatitis. My poor liver function also led to encephalopathy, which is basically damage or disease that affects the brain. I would constantly and repeatedly ask my family why I was in the hospital. I believed I wasn’t even sick, and insisted they were keeping me there against my will. I could not answer simple questions, and I was devastated. I cannot underestimate the feeling of utter loneliness and despair that one experiences with encephalopathy. I knew something was wrong, but I had no idea what was even happening to me. Unfortunately, my liver eventually shut down leaving my kidneys to try to do both functions. This resulted in my kidneys shutting down as well. Now, I was on kidney dialysis. Over time, and with the help and support of my family and friends, I started to get better, and no longer experienced confusion. The four times daily doses of medications helped. Nevertheless, I could not walk, and had almost no appetite. Later, I began some physical therapy, and two of my best days were the day I found out my kidneys had stated to function again, and the day I was able to walk with a walker. It felt so good to be able to go to the bathroom on my own and talk with my family and friends. I finally had hope that I would get out of the hospital. When I was finally discharged, I had been in the hospital for a total of three months. Upon returning home, I was kept on antibiotics which had to be administered two times a day. My liver was still not completely healed, and I was extremely jaundiced. I was itchy due to the high level of bilirubin in my system. The itch went from my head to my toes, and I was prescribed heavy sleeping pills which became my only escape from the constant itch. Most of my hair fell out due to the medication and the overwhelming stress. My mental health at that time was at an all-time low. I tried acupuncture for weeks, but it made no difference. Thankfully, my dermatologist was able to prescribe a gel to help me cope with the itch, and I went to phototherapy twice a week. Slowly, over time the itchiness went away. It was the greatest relief to me as my mental state was extremely fragile. The last, and perhaps, the hardest parts of my SJS/TEN that I am still dealing with are issues with my joints and my eyes. Due to such a long hospital stay, my joints have become incredibly stiff and painful. I am working towards strengthening the muscles in my legs, and I believe they will get better. However, my eyes will never be the same. I administer eye drops multiple times a day to combat the loss of tear production to my eyes, and once a week, I go to the ophthalmologist to have several eyelashes extracted due to the scar tissue in my eyes causing them to grow inward. Overall, I am so grateful to be alive and to be able to see! In fact, I’m still able to teach, and read and do all the things I love. I owe all my success with recovery to the nurses and doctors who helped me, and to my family and friends. Without all of them, I do not think I would have recovered. My heart goes out to anyone dealing with SJS/TEN and its side effects. I am happy to say I look and feel mostly like I used to, and despite the issues with my eyes, and the fear of how long I will be able to keep teaching full-time, I intend to keep moving forward. Finally, my purpose in sharing my story is not to convey the idea that I feel sorry for myself. I want people to know that SJS/TEN exists, and for those going through it, the support of family, friends and good doctors, nurses, and other healthcare providers is priceless. Even more importantly, I want to give hope to anyone going through this by saying that: You can and will get better. My heart is with you.