Sticky Blood-Hughes Syndrome Support
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New website for doctors, re rare disease

Hi everybody - found this in the press today: Hope it turns out to be useful:

telegraph.co.uk/technology/...

Mary F x

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Hi Mary

I haven't read The Telegraph yet today; clients, eh, they get in the way of even reading the paper. Maybe Doctors will soon realise that APS is not a 'Rare Disease' but a 'Rarely Diagnosed but Common Disease'.

Best wishes.

Dave xx

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Hi Dave,

Many of these so called rare diseases are not so rare in reality. ..I have Hypo'parat'hyroidism & it took many years to diagnose ( infact most of my life )

After knocking my consultant out of his comfort zone he is now after a lot off pleading looking for a secondary illness.

I thought i was going to loose my life to this damned illness rather than him listen to my crys for help.

The testing is longwinded & not always carried out in full.

I am no that far from you (swindon ) !...... I was sent to the Rheumatic disease hospital in bath where a Dr Edward Barnes took interest in my case i was delighted to find he was taking an interest.

My delight did not last long. Dr Barnes requested to see me but i could not get the funding for transport to get back to see him ( what a Joke ) i was given hospital transport to get there in the first place......I was choked

For me it is a constant battle with my body parts all in different departments. None of the consultants confere maybe if they did i might get my diagnoses.

Even at the Gps you can only discuse one thing yet i have so many symptoms !

I & many others are worn out with the battle.

I hope you are keeping stable with regard to your health. Jillymo

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LOL Dave :) Actually APS is officially not classed as a rare disease as our researchers found out when they applied for a grant from the Rare Diseases organisation!

Kx

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Well I put my symptoms in and APS came up 10th on the list - so at least it was in there!

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What on the website of the Rare Diseases UK organisation I was talking about? Website is: raredisease.org.uk/ - and they have definitely refused us grants in the past so if they list us please send me the link!

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I'll have a look at where it directs you. I have a feeling it was wiki!

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No it wasn't surprisingly Kate it was About.com!

Here is the link:

rarediseases.about.com/od/r...

I think you should do something about that.......

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Hi Mary,

Be good, hopefully docs will use it, would certainly help!

Love n hugs Sheena xxxxx :-) :-) :-)

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Not even on the list for me!

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I think it will need some fine tuning over time, but good idea in principle! Mary F x

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I put in symptoms in this order:

migraines blood clots fatigue constipation dry eyes

and APS came up tops. Hooray!

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Good. MF x

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I put in "fatigue,dvt, migraine" and APS was nowhere to be seen......

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Naughty old website.. I think it does need a bit more work! Mary F x

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Try putting Antiphospholipid Antibodies along with your symptoms .....

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Hi

I put in migraines, miscarriages, dvts, PE, skin problems, fatigue n pain! APS was top of the list!

Hugs n love Sheena xxxxx :-) :-) :-)

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Oh good, I see it as a naughty game playing with it, as it has made some people on other sites VERY CROSS! If they keep improving it with peer and public feedback it could be great! Mary F x

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