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"hi all
my name is jackie leader of the marfan syndrome group.
i help the above charity in th uk by c..."
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"I don't know..."
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"About 3 years ago I suffered an event. I loaded a bunch of boxes into my attic. For the next 1.5 years I..."
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"I go to the Cleveland Clinic in Cleveland, Ohio. They are fantastic and may be able to help you sort all ..."
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"I have not personally encountered Loeys-Dietz syndrome, and can't advise you on that. Have you looked at:..."
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"hi on here there are a couple of mums, maiasmum and laurajohnson who are members of the groupand you can c..."
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"totally agree with you and you have us here at mdj too!!!"
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"hope it is still going well with you?? things not good for me right now so taking things one steps at a t..."
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"hi my name is jackie and i am group leader, I have marfan syndromeand was diagnosed about 4 years ago.i ho..."
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"it has been very cold here lately which is not good formyjoints as they get more painful with the cold. b..."
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"I came across an interesting article on another board. http://www.inspire.com/static/inspire/reports/insp..."
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"I have hyper-extended my right arm twice and my right knee once. I can not lay at night with my arms flat ..."
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"Thank you all for your comments let's keep spreading the word and make this happen. Thank you all for your..."
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"I am glad that you finally have answers I have numerous visits to doctors until I was diagnosed and relief..."
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"I have very bad days particularly in winter as the cold affects me the worst and I will have good days wit..."
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"Pain with intercourse is a fairly common, though not universal, problem for women with hypermobility for a..."
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"Hi,My name is Jackie and I have Marfan Syndrome, here in the UK it took 6 years to diagnose after 2 bouts ..."
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"this is a great idea let's start posting your personal experience.For me the main problem is mutliple join..."
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"Consider also Ehlers-Danlos syndrome, with its several variants. Yes, get it checked out. Having either Ma..."
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"There is a crossover in body type between Marfan's and the other genetic collagen disorders. A Marfanoid ..."
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