Sudden Sight Originals

Toxic Epidermal Necrolysis

Usually, I am a vegan. As of late, I have been… not-quite-so-vegan. Let’s just say I’ve needed certain comfort foods that have most definitely comforted me. I went through a similar process when I got out of the hospital. I’d been vegan for over a year at that point, but was staying at my grandmother’s for recovery. There was no telling Nana that she couldn’t make me macaroni-and-cheese or any number of other Nana Specials for her baby girl. So, I’ve been branch out past veganism again. Today I ate shrimp and a pepperoni pizza. It’s strange the things we crave when everything else our world turns upside down. Tomorrow, I might have hot wings…

Back in 2008, I was very vegan and very image-conscious. I was 20 and in a theatre school. What else would you expect? I had never heard of Stevens-Johnson Syndrome (SJS), nor did I particularly care to know what it was. But boy did I find out. Apparently, it has a high mortality rate, and there is no cure. There is not even a defined way of treating it, nor are there any medications that are proven to help slow down the process.. When the very cute (but likely gay) dermatology resident was telling me about the condition, I was thinking more about his crisp pink oxford and whether or not I could make it ballet on Thursday. I have a tendency to be late for everything, so even one more tardy would leave me with a B, and the quarter was only half over. The doctor kept trying to tell me that this was a very serious condition, but I heard very little of his speech.

Later, I would learn that SJS is at a basic level an allergic reaction, usually to a prescription medication. It affects you within the first three weeks of beginning a prescription, and it attacks instantaneously. At this point, there is nothing the doctors can really do except try to minimize the impact and make you comfortable. In the span of three to ten days, it can affect any percentage of your skin and internal organs. It attacks your mucous membranes, creating ulcers and blisters. If doctors are not careful, this can also lead to sections of skin fusing together. We had to be careful to keep my toes and fingers apart, so I wouldn’t end up with webbed feet! Luckily for me, it did not seem to greatly affect my internal organs, but it severely attacked my skin.

SJS kills off the cells which hold together the dermis and the epidermis. Fluid builds up under the epidermis, creating blisters. These blisters can join together, causing larger pieces of epidermis to slough off. Most people who experience SJS have less than 10% of their bodies affected. This is what is technically labeled Stevens-Johnson Syndrome. Even at this stage, the mortality rate is still around 5%. The next label on the continuum scale used for diagnosis is SJS/TEN (toxic epidermal necrolysis). This affects 10 – 30% of the body. Above that is very severe and is considered TEN, and the mortality rate is around 35-40%.. My body was affected at 85%.

Every time the doctors and nurses tried to tell me I might not survive, I wouldn’t even let them finish the sentence. I told them I wasn’t done here. I still had so much to do and be in my life. It just wasn’t my time yet. After the worst, nurses would tell me they’d never seen a case as bad as mine, but they’d also never seen a survivor. I would also find out later, that the amazing doctor who was treating me in the burn unit had decided to try a whole method of treating the condition. It’s what they will be using from now on.

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1 Comment

  1. Lyn

    May 18, 2011 at 1:45 am

    Wow, Alex I had no idea. You are truly a brave young woman!
    Keep writing. If nothing else, Facebook can be an enormous platform for support. I am curious about the google ad flash I saw here that said there was no warning on your prescriptions to watch for a rash? Are you suing the FDA?
    Over the past couple of years I have read your posts and prayed for you. I will continue that, but is there something else I can do? Not much in the way of funds, but I have other talents 🙂 please let me know.
    You are my new hero!

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