In most of the articles I've seen and
heard today, Harold Ramis dies of a rare disease, auto-immune
vasculitis (correct) – and journalists have shown little curiousity
to explain it.
I'm not a doctor, but since my wife, Ms
T to you, suffers from auto-immune vasculitis, I thought I'd set down
a brief explainer; I haven't seen many media outlets bothering.
We never saw it coming. Recently, she
pointed out that in the January before the disease took hold, she
managed 13 bushwalks in 30 days – all of them in the 5-15 km range,
all rated “medium” or “hard”. Within 12 weeks of that glorious time,
she was 32 kg, unable to eat or walk any distance, and (as it turned
out) toxemic. Her once-d-cups were replaced by ribs.
What turned out to be auto-immune
vasculitis had closed her celiac artery; this caused liver failure,
which was manifest in stomach ulcers of horrifying severity.
The rest of the toll of the vasculitis,
before it was discovered, was: a 95 per cent occlusion of her right
carotid artery (with a thankful growth of “collaterals” that have
actually kept her alive); the anterior communicating artery (in the
head) doesn't show up on scans; one renal artery; one brachial artery
in one arm, and a radial artery in the other.
The
proximate cause is that the immune system rejects the blood vessels
and attacks them. The resulting inflammation closes the vessels; and
once closed, they don't come back. A vein taken from her leg keeps Ms
T alive by feeding her liver; the others are gone.
The ultimate cause - what sends the immune system on a kill-its-host mission? - is unknown. Here's an observation: since 2000 the National Health and Medical Research Council has spent $86 million on quack medicines, and sod-all on auto-immune vasculitis.
And those who have read our travails
over the years also know that in a serious case, the immune system
has to be brutally suppressed. If corticosteroids don't work, the
“gold standard” therapy is cyclophosphamide.
Now, chemotherapy has been the subject
of a huge amount of research over the years, with two aims in mind:
make it more directed to the disease it's treating, and reduce the
toxicity of the side-effects.
Which has improved both the
effectiveness of treatment and the quality of life for cancer
sufferers.
Cyclophosphamide isn't one of the new, kinder drugs. It's a nasty, nasty
piece of work. Developed in 1954, it's only a couple of generations
away from mustard gas.
That's because this is a rare disease.
If USA Today got things straight, Harold Ramis' presentation was that the vasculitis attacked
the blood vessels feeding nerves, which Ms T believes would be even
worse than her own suffering.
Prognosis? We hope that the cyclo dose
doesn't kill, because without it, the vasculitis will.
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