Marfan syndrome

[~shazz~]

Hi i was just wondering whether anyone has any personal experiences with Marfan sydrome one of my very good friends has just had her 3 year DD diagnosed with with ?

[Arimeh]

My DH knows a lot about it, he was tested for it when he was younger.

I'll get him to pop in and tell you what he knows when he comes inside.

[Nai]

My best friend's DP has Marfans and another friend has a DD with it too aged 6.

[~shazz~]

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

[Nai]

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.

[Arimeh]

This is from wikipedia:

Marfan syndrome - Wikipedia, the free encyclopedia




Links to non-commercial sites, such as Wikipedia, are allowed now under the guidlines, and save space...

[~shazz~]

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

[Arimeh]

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.