4 Apr 2012

Diary of a Red Man: Better Red Than Dead

By Elmar Ersch (Own work) [CC-BY-SA-3.0 (www.creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons
Never before have I seen a doctor so visibly shocked. It was almost cartoon perfect, with hands raised in horror, eyes bursting out of their sockets and only pure professional decorum restrained him from emitting a shriek. “You have to be admitted to hospital... right now!” That was the start of the end of my life.

I didn’t even have time to gloat over my correct internet-driven self-diagnosis; had to satisfy myself in private later. Just two days prior to this, another dermatologist uncharacteristically admitted to being clueless as to my condition. Yet here was a doctor pushing me onto the critical list. If a misdiagnosis can be fatal, the advantage of a non-diagnosis is the freedom to seek another opinion. Especially when it appears that erythroderma can be fatal.

No large-scale study has been done on this, but the data emerging suggests that erythroderma has a potential mortality rate of about 40%. Huh?! 40%!! Even my dermatologist plucked this number out of the air when he was castigating me for allowing the internet’s amateur diagnoses to stress me out. However, even Medscape, a website for health professionals, quotes a figure of 43%, although it tempers this alarmist figure by saying that only 18% of these could be linked directly to the skin condition. This actually places the mortality rate at about the 10% mark. With so many high numbers the only conclusion is that erythroderma can kill you!

I initially had the morbid thought that many cases of erythroderma were diagnosed at the autopsy. I was walking around with this condition for some two or three weeks before someone identified it. Apart from the slowly expanding red rash, my own symptoms lacked any itchiness or soreness, nor were there any pussy infected spots and the exfoliation had not yet started. On the whole, it was perfectly possible to carry on working, hiding the rash beneath a corporate uniform.

With hindsight, the problem with erythroderma is that it does not ring a loud enough alarm bell as to how lethal it can be if untreated. It needs a corny pun such as “A Red Rash to a Bull!” I know, everyone loves a corny pun. The real problem is that the red skin no longer functions normally in helping the body regulate itself. Your skin is fundamental in regulating the body’s temperature, water and electrolyte balance. As the rash expands so the level of dysfunction increases. There comes a point when the amount of red skin puts the body under risk of a serious malfunction.

I will look more closely at all the above issues in the first few articles and diary entries. I don’t wholly believe this alarmist 40% mortality rate any more and will review the current medical literature on this. However, the message here is that some kind of alarm bell is necessary. If you have a condition in any way similar to erythroderma you really need to find an experienced dermatologist. Even once you have been diagnosed and are trying to sort out your life, you will need to learn how to control some bodily functions that were previously on automatic. The risk of messing this up is very real.

I have had to learn a lot very quickly. The aim of this website is to share this with you. It is also important to cover the full range of symptoms so I welcome advice from people with similar conditions but different experiences.

For better or worse, there’s no stopping on a red route.

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