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During August, we have some challenges you can join to support us in our fight. Check it out. August 3rd Sunglasses Day Challenge: Support SJS survivors affected by photophobia by wearing dark glasses indoors, outdoors, and at night. Light sensitivity/photophobia is one of the long-term effects of SJS/TEN, as a result some survivors experience severe difficulty dealing with bright light both indoor and outdoor. Some describe this experience as temporary blindness. The next time you see an SJS/TEN survivor wearing dark glasses inside or during the night, think: this is not a fashion statement; it’s a survival statement. August 9th Visual Accessibility Day Challenge: Explore the visual accessibility function on your smartphone and try using these features! Also, be mindful of the e-mails you send today; think about the font size, colours, and spacing. How would these affect individuals with visual impairment? Visual impairment is a decreased ability to see that cannot be fixed with corrective devices such as glasses or contacts. Many SJS/TEN survivors have long-term complications to their eyes even after leaving the hospital. These complications often make it difficult for SJS/TEN survivors to read particular writing or see specific images. Did you know that nearly all smartphones have accessibility features to help overcome sensory impairment? August 17th Virtual Town Hall Challenge: Join us at our Virtual SJS Town Hall Please join us at the SJS Town Hall where we will be sharing updates, connecting with keynote speakers and listening to the harrowing stories of SJS / TEN survivors. ​ This town hall event offers public awareness, education, research updates as well as addressing some common issues and concerns on the subject. SJS/TEN patient representatives lovingly share their stories in an effort to help bring and spread awareness of the illness. August 17th-19th Virtual Move-A-Thon Challenge: Join SJS Canada from ANYWHERE as part of our Virtual “Move-a-Thon.” We are moving our bodies in support of Stevens-Johnson Syndrome Canada (SJSC) from August 17-19. August 18th SJS Awareness Day Challenge: Complete all checks for the day! Don't forget to Social media blast with informational facts about the illness Follow us on social media to hear survivors share their stories with us Encourage others to wear blue, SJS official color Be encouragement to tell someone about SJS/TEN throughout the day Join our virtual/in person SJS/TEN awareness Move-A-Thon Survivors can get together, within a virtual space, with a facilitator and share their experience and support each other. Please feel free to spread the word or distribute SJS awareness materials within the community August 23rd Hat Day Challenge: Support SJS/TEN survivors by wearing a broad rim hat! Check your closet – how many clothes can you identify with UPF? Wear your UPF clothing if you have any! And remember to wear sunscreen of at least SPF 30, reapplying every 80 minutes! Many survivors have to wear broad rim hats and other head covering to protect themselves from the sun as their skin has become very sensitive. Along with the dark glasses, the hat shades the eyes and help allow them to cope with the effect of the sun on their eyes. Some survivors also wear UPF (ultraviolet protection factor) clothing to protect their body from the sun’s UV rays. August 29th Eye Care Day Challenge: Remember to give your eyes a rest during your workday by using the 20-20-20 rule! Every 20 minutes, shift your eyes to look at an objective 20 feet away, for 20 seconds! (Have dry eyes? Use artificial lubricant or try a warm compress! Wet a clean washcloth with warm water and wring it out until somewhat dry. Place the washcloth over your closed eyes for at least 1 minute) The pain of SJS/TEN is so excruciating, sometimes just opening the eyes causes severe pain. As well some survivor’s eyes lids were sealed shut for days because numerous sores covered their eyes. When the eye lids were finally open again, some survivors sustain severe vision loss, and for some their eyelids never opens resulting in blindness. We kindly ask you to post your photo or video as you engage in these activities with #sjscantstopme

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.