| New Diagnostic Criteria for Marfans Syndrome |
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Pixi
Super Moderator
Joined: 06 Mar 2009
Posts: 2086
Location: Pixiland
54072 Fibrillin
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 Posted: 3:43 pm, Sat 03 Jul, 2010
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That is great news. A lot of people are not diagnosed because they don't look like the 'type' doctors expect. Polly and Sharon are very good examples of this. There's also those who are left in diagnostic limbo because they appear to have so many of the diagnostic criteria, but not enough to make a conclusive diagnostic. Jo is a good example of this. Hope the new diagnostics help prevent these problems
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Rachel
Super Marf
Joined: 14 Mar 2009
Posts: 699
Location: Dublin
20441 Fibrillin
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| Posted: 10:38 am, Fri 02 Jul, 2010
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Darren
I realise the UK, as Ireland, are doing research in Marfan Syndrome, but the umbrella research country I think is the USA. I dont see why diagnosis between different countries should be different...currently I believe diagnosis is based on the Ghent Criteria (Belgian) and this is mainly just an alteration to this criteria to ensure patients who dont actually have Marfans arent labelled with it and also hopefully reducing the misdiagnosis between Marfan and LDS / vEDS.
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Darren
Site Admin
Joined: 26 Feb 2009
Posts: 2143
Location: Cheshire, UK
52844 Fibrillin
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| Posted: 9:45 am, Fri 02 Jul, 2010
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Rachel
Super Marf
Joined: 14 Mar 2009
Posts: 699
Location: Dublin
20441 Fibrillin
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| Posted: 10:19 pm, Thu 01 Jul, 2010
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Not sure if you are aware but there are New Diagnostic Criteria for Marfan Syndrome Published in Journal of Medical Genetics. It may be all a bit heavy reading but anyone going through diagnosis at the moment should ensure that their relevant geneticists/doctors are aware of this revised diagnosis criteria. More information can be found HERE and HERE
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