Marfan syndrome - can u pls tell me more about it

[biglips]

as my cousin was diagnosed with it as she got very long twisted arms and long legs, 6' 1" tall, a very small head and her eyes arent straight (one eye is higher than the other)

her Grandmother died when she was 29 of a bad heart - she had the marfan syndrome

now her niece (my cousins sisters DD) is 8 mths old and may have it too as she got long arms and legs - she was a normal looking size baby when newborn.

[Scumster]

There's some basic info and support group details here, biglips

[expatinscotland]

i think the assisinated US President Abraham Lincoln may have had it. his bones were exhumed for testing, IIRC.

[biglips]

is there anymore?

thanks Scumster !! - lovely name btw!

[nutcracker]

I used to babysit a for a family whos 3 kids all had Marfan syndrome.

It was a long while ago now really but from what I remember the main problems with the eldest was his sight, he wore glasses from an early age and at one point was classed as partially sighted. He had regular heart checks but I can't remember him having to have medication or anything. He is now healthy 21yr old.
His sister also had sight problems but hers were not as bad as his, her problems were more to do with her heart and she was on a far bit of medication. As far as I know though she is now a healthy 18yr old although I think still takes some medication.

The baby of the family seemed to be the least affected, he never needed glasses and had no lasting heart problems. He is now about 13.

TBH they led more or less completely normal lives. Their dd had to be careful of staying out to long in cold weather because of her heart but other than that I cannot remember it greatly affecting their lives at all.

[gegs73]

There is more information about marfans here marfans

Links to Marfans Association at the bottom of the page. Hope this helps.