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Jennifer’s Story

Updated: Jul 10, 2023

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.

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