thanks that would be great Mel
Nai does your friends DD have limitations or how does she cope i'm not all that familar with this syndrome but i know Izzy has heart problems and has the pysical appearance of marfans
My friend's DD has physical appearance of Marfans and has to have regular check ups. As yet she hasn't got a lot of limitations due to the heart problems but they have to keep a close eye on her. For all intents and purposes she seems to be fairly normal for her age as far as activity etcgoes.
thank you so much for your reply's as you could imagine my friend is fairly well freaking out i'm hoping to understand as much as i can so as too help her so thank you again
These days if they make sure that they get regular checkups the symptoms can be managed very well and the prognosis and outlook is much more positive than it used to be. Of course there will be things that she can't do but in most respects your friends DD should be able to live a relatively normal life provided she has that regular management.
ok - back - and he is dictating over my shoulder as I type:-
He was always told that Marfans Syndrome was essentially if the body grows and your cardiovascular system can't. Sort of like veins and arteries are therefore stretched and are thinner than they should be. Therefore - it puts a strain on the whole system, if your diet is poor then your chance of having clogged arteries is higher, usually they don't exercise because its too dangerous (that is usually the extreme cases)
Of course with any syndrome it has different severities - the highest level of it doesn't have a very long life expectency - of course - that is MOST severe. Most people with it do undergo treatment of some sort, usually meds.
A person with severe marfans will usually only get to about 45 years old - once the heart goes then you are basically stuffed.
He said to google it cos he didn't research it himself - he was just told this by his doc when he underwent testing for it. He went for testing because some of the telltale signs of the disease he had - ie, like his fingers were longer than his palms - lots of tall people get tested. If they have narrow shoulders - that is also a telltale sign of it. Just out of proportion really.
He is really tall, and had really long fingers (not so much now) but he is in proportion - so he didn't have it. And having a high palette as well.
I'm sure my kids will be tested for it at some point in their life.
Thats about all he knows.
Last edited by Arimeh; December 28th, 2008 at 12:42 PM.
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to you and your friend. I hope that this can be controlled by medicine or something so she doesn't suffer too much.
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