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Kim’s Story

Updated: Jul 10, 2023

The impact of Stevens Johnson Syndrome affects each victim differently depending on the severity and duration of the illness. Here’s one victims’ story who asserts she escaped the destructive course of SJS with relatively little damage.

It all started with feeling flushed and slightly feverish… “I must be coming down with a cold” were my thoughts. Fast forward a few hours and now my eyes were starting to burn, really badly. I could only keep them open for a few seconds at a time before having to close them for some kind of relief. Now my body temperature is beginning to act very, very strangely. I would be freezing cold one minute, cover up with a blanket and be burning hot the next minute. Not just hot – burning hot.

That night was the worst I have ever experienced. My body temperature was raging out of control and I could barely open my eyes for the pain. The next morning I awoke with what looked like a heat rash all over my body. Although concerned, I thought it normal since my body temperature had been so hot the night before. As the morning continued, my health continued to plummet, and the rash became increasingly purple and hive-like. It was the craziest rash I had ever seen.

My husband and son were planning a trip to leave for the day so I decided I would go back to bed to try to sleep off whatever was going on. As my husband was just about to head out the door, he turned to look at me and said “You know what – you really don’t look well and I want to check something on-line before I leave you.” Two minutes into his search online regarding side-effects of the medication I was taking there it was – “Show me your tongue” he said to me with a look of fear on his face. As I stuck out my tongue, his faced became very pale and the next words to exit his mouth were: “GET IN THE CAR NOW!!!!”

The next 24 hours were a blur of needles, shots of adrenaline, bags of cortisone, Benadryl, and very concerned faces of nurses and doctors that were caring for me. Although the rash and my vital signs had stabilized the hospital staffs were very unsure as to what to do next since the rash was not going away…

Today, nine months later. My eyesight has deteriorated; I have chronic fatigue, chronic pain, memory and concentration issues, and difficulty coping with stress and anxiety, sun and heat sensitivity. My skin that once felt like sandpaper for months almost feels normal now.

Despite all this and in spite of my bad luck, I consider myself to be extremely luck. I suffered a rare case of SJS that was caught in the early stages of development. My skin did not develop painful burn blisters, I was not blinded, my internal organs are still functioning properly. My hair only fell out a little. I’m alive. Compared to the path of destruction that SJS can create, I managed to escape with relatively little damage.

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