Just read this very sad article on th... - Hughes Syndrome A...

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Just read this very sad article on the daily mail.

jennybee profile image
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dailymail.co.uk/health/arti...

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jennybee
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MaryF profile image
MaryFAdministrator

Hi there, indeed a sad article and one so young with a future ahead, it makes the work of this charity ever more important in raising awareness, hopefully incidents like this will become less frequent, however never forgotten. Thank you for loading this up. Mary F x

SueLovett profile image
SueLovett

What. A tragic story my thoughts are with Emmas family

travelnut profile image
travelnut

It says in this article that heparin based drugs aren't as effective as warfarin. I know this is in a newspaper and that it depends how any drug is used but is there any truth to this statement? I have never heard this and I take heparin based injections to maintain my anticoagulantion when my INR drops too low.

Sal0712 profile image
Sal0712

That story is so sad. I have a three year old and even though we would love another baby, this is why I've stuck with the princess I already have. Everyone keeps asking if we are having any more children, and although it breaks my heart to say no, at least I know that I will not end up like poor Emma. I would rather stick with what I have, as I have been lucky and blessed to have my little girl. Our thoughts are with Emma's family and friends x x x

Manofmendip profile image
Manofmendip

This is a tragic story indeed.

I have switched from Warfarin to Fragmin this year, on Prof Hughes' advice and I think the anticoagulation on Heparin is more stable and consistant than on Warfarin and less danger from Haemorrhage, if one has an accident or a fall, than with Warfarin.

I wonder whether the medics were giving her the correct dose of Heparin for her weight?

Best wishes to all.

Dave

Very tragic story, but I am a bit wary of the journalist's statement that heparin is not as effective as warfarin. It seems more likely that the CAPS was triggered by a number of factors and, as Dave suggests, she might not have had the correct dosage - incredibly sad for the poor family whatever :(

Thanks for giving us the heads up on the article Jennybee - our pro bono publicist is going to write to their health editor to thank them and offer help with accuracy for any future stories :)

MaryF profile image
MaryFAdministrator in reply to

Great, this attention to detail is what is needed here, and it may help with future cases. Mary F x

InSpain profile image
InSpain

My deepest sympathies go to this ladies family, how very sad. I lost my Aunt to CAPS nearly 2 years ago. I agree with you Mary F attention to detail is needed to help in the future. I think it's very important too that the APS publicist is going to offer help with accurate reporting, so that there is no need for us to feel frightened, scared or worried unnecessarily by inadvertent coverage with inaccuracies. xxx

Gadgets profile image
Gadgets

Terrible, they should of known better, I thought this was common knowledge?

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A short article From The Daily Mail

http://www.dailymail.co.uk/health/article-2339263/Fobbed-doctor-Now-second-opinion-expert-just-phone

A very sad story, and a clear picture

http://www.dailymail.co.uk/health/article-2700577/Dizzy-spells-warn-deadly-blood-clot-And-not-just-l

A great mention from Dr Scurr off the Daily Mail, of our condition and the charity launch

but also knows of our forum....