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[Archived] Fabrys Disease

Jordan

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Jordan Uefa Europa League

Jordan

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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.

Alan75 Champions League

Alan75

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Sorry to hear about your illness.

No doubt you will have done some research but just in case youve miised

Advice and support

Society for Mucopolysaccharide Diseases

Tel: 0845 389 9901

Email:mps@mpssociety.co.uk

Website: www.mpssociety.co.uk

LINK ,

LINK 2

boris bear Premier League

boris bear

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Sorry I cannot help with any info but I just wanted to say I'm sorry to hear about your diagnosis and I hope it goes well when you see the specialist next week.

Jordan Uefa Europa League

Jordan

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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.

Ossydave World Cup

Ossydave

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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 :(

Billy Castell Champions League

Billy Castell

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I have a good friend who has had two strokes. It has really knocked a lot of life out of him, even though it was about 5 years ago. I hope you recover well Jordan, as I know it is a very bad thing to happen.

colin Champions League

colin

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Yes, all the best, hope you get yourself back on track.

Cheers

Colin

  • 3 weeks later...
Jordan Uefa Europa League

Jordan

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Just to let you know that I will begin my treatment next Monday at Salford Royal. Initial tests on my Kidneys suggest that there is no damage however I am still awaiting tests back on my heart.

Jordan Uefa Europa League

Jordan

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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.

Jordan Uefa Europa League

Jordan

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Hope you are soon sorted out Jordan..... btw I suppose the heavy sessions are history? :huh::(

Not history but a rarity.

Had 5 alcoholic drinks since December!!!!

AlanK Uefa Europa League

AlanK

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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.

Al

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