A Conversation for Marfan Syndrome

Wow....

Post 1

Suke_Kawamoto

I seriously thought there wouldn't be anything on Marfan syndrome. I didn't know about it until the doctor told me i may be at risk, due to the fact I have a family history of it and I have 9 of of 10 of teh most common symptons....inclluding long thin fingers.


Wow....

Post 2

RFJS__ - trying to write an unreadable book, finding proofreading tricky

In my case family history gave the doctors advance warning, and accordingly I've been having checkups since birth. But as the Entry indicates, that's far from universal (the person who wrote it having been diagnosed at 31); I don't know how good the diagnosis rates are.


Wow....

Post 3

Suke_Kawamoto

true. I got my test results back negative for it, however, so its okay. i think more people should be informed about it.


my daughter.....

Post 4

doedeedoe

my 14y/o daughter has just been diagnosed with marfans an it's scarin the life out of me!!!!! smiley - wah

any advice to help me cope as a parent wud b greatly appreciated. smiley - smiley


my daughter.....

Post 5

RFJS__ - trying to write an unreadable book, finding proofreading tricky

Scaring the life out of you...? smiley - yikes I'd say smiley - dontpanic, then; it's entirely possible to have a fulfilling life with Marfan Syndrome. You'll basically have to be... supportive, which of course as a parent you'd have to be anyway.

On a more practical note, ask if you haven't been advised whether your daughter can safely play contact sports, etc. And ask these people: http://marfan.org.uk/


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