O/T Medical question Marfan Syndrome Options

[spare time toys]

Does anyone here have a relative with this? Our little girl has been diagnosed with it. They did the echocardio and she has a slight enlarging of the aorta. They said to come back in a year and they will remeasure, I just want to know how this changes things if you have it in your house? She is just not suposed to play high impact sports.

Thanks for any info.

-Larry

[sww914]

I don't know anything about Marfan's syndrome, but my son has a genetic disease, Achondroplastic Dwarfisim, like the mom & 1 twin on Little People Big World. We've been around and around with health problems with him, and I have 1 piece of advice for you. Find the very best doctors available in the country and go to them. I don't mean whatever specialist that is in a related field who happens to be near you, I mean the doctor who literally wrote the book on this syndrome. If we had depended on whoever fell out of the woodwork, my son would have died before he was 2. He's 10 now and doing great, but it was close a lot of times.
You might try to contact David Rimoin's group at Cedars-Sinai in LA. He's a pediatric genetic specialist that deals with lots of things. He did write the book on Dwarfism, but I don't know if he is well versed in your area of illness.
You are your child's only advocate. If somebody is telling you something that sounds like B.S., that's because it is. Follow your gut and you can get through it.