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[Archived] Fabrys Disease

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I have recently been diagnosed with Fabrys Disease and I was just wondering whether anyone else suffers from this or knows anyone who does. From what I have read it is extremely rare and effects only 1 in 40'000 males. I am due to see a specialist in Manchester next week where I should learn more.

It sounds like it can cause heart disease, kidney failiure and strokes. I have already had a Stroke and don't fancy getting anything else.

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Oh dear - hope your better soon mate.

What is the disease then? Is it effecting you now, or is it that it can cause those things mentioned?

Well I had a stroke a couple of months ago and I have suffered from aching hands and feet for years however people kept on telling me it was something else.

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From what I've read, a lot of the symptoms are similar to mine. Mine are the result of a road accident leaving me with a skull fractured in 5 places and bleeding on the brain though.

I've learnt to cope with mine and keep things under control as well as I can do.

One of the problems I have is every time I get a headache or any minor little thing, I associate it with my disability though and panic. Its silly and I need to stop it :(

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  • 3 weeks later...
Good luck Jordan.

Does it mean a few days in there, or is the treatment done a day at a time?

Yes it is done during the day. Initially they say it will take about 5 hours however eventually it should only take between 1 and half and 2 hours. I need to have it done every two weeks however after about three months a local nurse will come and do it at home.

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Not history but a rarity.

Had 5 alcoholic drinks since December!!!!

Bloody hell! There is hope for me aswell then !!!

Serioulsy though, all clubs need fans like you be it us, the Dingles or whoever Robbie Fowler signs up for these days. You take it easy.


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