Dermatomyositis

Six months ago after developing a rash and a fever which doctors initially thought was Dengue Fever, a virus transmitted by mosquitoes, I was rushed into hospital and after a week of being tested for over a hundred different viruses, I was diagnosed with a very rare auto immune illness (affecting just five in a million people) where my body is attacking its own muscles.

Since then I’ve been in and out of hospital. Initially for a month, then frequent return trips when I’ve developed infections including two bouts of pneumonia. Or lying in bed at home too weak from muscle loss and doped out on drugs to be able to let you know why I haven’t written a newsletter since early December.

Now, thanks to some powerful new medication which I have to take just once a week (though I take plenty of other drugs the rest of the week) I’ve finally got the energy to write about it.

(The new drug is used to treat childhood leukemia, to delay HIV turning into AIDS, and to cause pregnant women to abort… so you can imagine how strong it is. It almost knocks me out for two days a week).

my rashed and savaged hands hooked up to medical equipment

So this is why I’ve not answered emails, tweeted, logged into Facebook, updated my web sites, written a newsletter or indeed done any work at all.

I’ve not been able to.

A blood culture from blood taken from me when my temperature was over 40, finally revealed that it wasn’t a virus after all and I’d developed something called Polymyositis.

Then just over a week later they found they’d got it wrong. I didn’t have Polymyositis after all. The results of a really painful muscle biopsy in my thigh revealed it was the even rarer Dermatomyositis.

(if you want you can read more about Dermatomyositis here, or on the US Gov Medline Plus site, or at the Mayo Clinic (which is probably the best place to be treated for it but seeing I live in Australia and can’t travel it’s not an option for me)

You can read the long, more detailed, version here.

phil

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