TENS: The disease that burns you from the inside out
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TENS: The disease that burns you from the inside out


Let’s just see how your skin is progressing. Melissa Mok’s skin still bears a few faint scars from her ordeal a year ago. The 32-year-old went from healthy to the intensive care unit after developing a mild form of toxic epidermal necrolysis syndrome, or TENS. I had blisters all over, all over my face, eyelids, my ears, everywhere all the way down to the bottom of my feet. Dr. Neil Shear is head of dermatology at Sunnybrook, and describes TENS as a severe and life threatening disease. What it involves is your skin basically is burning off your body from the inside out and it’s horribly painful. He says about 1 in 5 people will die from it, and 4 out of 5 people will suffer the rest of their lives from having had it. And what could cause this horrible thing? Well actually, in about 7 out of 10 cases we do find the cause and it’s usually one of a few well-known drugs that can do this. Those drugs include carbamezapine used for pain disorders and epilepsy, as well as allopurinol, used for gout. TENS typically develops within the first month of therapy. If you have been newly prescribed one of these drugs, Dr. Shear says you should ask for a simple genetic blood test first. That will tell you if you’re susceptible to TENS. That applies to anyone prescribed allopurinol. For carbamezepine, that includes anyone with origins from southeast asia. Dr. Shear says right now, not enough people know about this test. If you had the gene that causes the problem, then you could have a really specific discussion about what are the alternatives. If there is no alternative than you have to pay close attention. Not everybody who has the gene is going to get the reaction, but everybody who has the reaction has the gene. Melissa says the genetic test is something she supports to ensure no one suffers the way she did. It could happen, it just could happen even though it’s really really rare. If anyone is taking any of those common medications, it’s, you know, good to know. Sunnybrook is now a leading centre for treating TENS, and Dr. Shear is a leading advocate in supporting the genetic test, and more awareness about it. With Sunnyview, I’m Monica Matys.

5 Comments

  • Jessica wittenburg

    Thankyou for the information, I personally have suffered from this 4 times from the age of 18 to 24 and it wasn't untill the 3rd visit that they believed I might have SJS however I was missing key symptoms and I had 60-80% coverage. Wish I would have known about Tens being triggered by Antibotic's as each time I was hospitalized with agonizing blisters covering my body, only the 4th time did I do my own research and demand to be transferred to the burn victim unit where I was able to be treated correctly for my symptoms.

    Now mind you, if your like me and you have Psoriasis they might send you home (at the er) because they believe its a Dermatitis flare even if you explain that its not as you know your body too well.

    This reaction often starts with small red dots and red patches on the hands an feet (for me anyways) thats very tender almost feels like stinging within the first 12-42 hours and worsens the longer it goes. Within 2-3 days I am usually back in the hospital and admitted as an inpatient due to misdiagnosis as they refused to listen originally.

    If you believe you have this condition, Please! Please always get a second opinion as well as any test to show that your not just having an allergic reaction, this condition can be very deadly and speaking from experience it can possibly place you upon a fatal reaction thats harder to treat once it hits that point without proper care.

    My advice, do as much research as possible. Taking a test to test for the gene may save you or a loved ones life from experiencing the horrors of going through extreme pains that are practically unimaginable.

  • elizabeth perez

    I was born with this and i had to be in a incubator for several weeks or months or days idk but Now in 2019 i am now normal/ok

  • monicablair258

    OMG IT’s been 15 + years & I’ve done so much research But gave up after seeing so many doctors & having these very same symptoms as this young lady I was in the hospital for three Long agonizing painful Scary months they told my family I would survive But somehow I here today 20+ years later But the side side effects I live here in O’FALLON MO Seen Hundreds of eye specialist & yet no one can help me But if there is help out here someone Please Lead me in the right direction Thank you💖💖💖

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