[Archived] Fabrys Disease

[Jordan]

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]

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

[1864roverite]

Good luck mate, it was nice to see you fit and well at Coventry.

[boris bear]

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.

[T4E]

All the best Jordan, glad to hear you're up and about again.

[Hughesy]

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?

[Jordan]

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.

[Flopsy]

at least they've finally worked out what it is.

Does this mean we have to be nice to you now?

[Ossydave]

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

[adopted scouser]

Well I had a stroke a couple of months ago and I have suffered from aching hands and feet

You could probably get a game at the moment !

Sounds awful, get well soon pal.

[broadsword]

Hope next week goes well for you, Jordan.

[MCMC1875]

Happy Birthday pal!

[Billy Castell]

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.

[dave birch]

Take it easy Jordan.

Get well, get well soon.

[ABBEY]

take care pal..

[roversmum]

Best wishes, Jordan, and hope we get three points for your birthday!

[colin]

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

Cheers

Colin

[Jordan]

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.

[bellamy11]

Hope it all goes well for you mate.

[den]

Good luck Jordan.

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

[Eddie]

Best of luck.

[Jordan]

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.

[thenodrog]

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

[Jordan]

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

Not history but a rarity.

Had 5 alcoholic drinks since December!!!!

[AlanK]

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