I would like to inform everyone that at Mount Sinai in New York City we have a very active, mutli-disciplinary approach to patients with aortic and vascular...
Please excuse how long this is! At the end of 2005 I had my son visit several doctors to investigate the possibility of Marfan. The last one he saw was a...
Scott- Those numbers represent the size of your son's aortic root and ascending aorta. How old is your son? Those numbers alone are not alarming. Has he had...
What part of the country are you in? A lot of people on here are very familiar with where the good clinics are. In Texas, I think it is Houston. Tammy...
Scotty, before your son has radical surgery like that I would definitely get a second opinion!!! That sounds really really excessive and from what i Was told...
I live in Ozark, Alabama, and we had the echocardiogram done in Birmingham. The test results went to a doctor closer to us, but as I said, they wouldn't give...
I don't want to scare you, but if you all have the symptoms and your son is 18, you may be the one with the immediate needs. If you are in your mid-30s or...
National Marfan Foundation NMF Offers New Teleconference Support Groups for Parents of Affected Children Are you the parent of a child with Marfan syndrome or...
Hi marfans_support_and_chat, I set up a Facebook profile where I can post my pictures, videos and events and I want to add you as a friend so you can see it....
Hi there,  My daughter was diagnosed with Marfans syndrome 3 years ago and is currently on Atenolol daily to reduce the pressure on her Arota. She goes...
Hi my name is Kim Woodard and I was diagnosed when I was seven. I was 6 ft 4in when I was 9 years old. Help her look at all the positives she can reach any...
Hi Sherry, My son is 8 and was diagnosed with mfs 4 years ago. He has eye, heart, and skelital issues. He is also very tall for his age. Are you on the e...
Hi Sherry, Welcome to the group. One thing you can do for her is remind her that Super Models are all very tall, make her propud of her height so she does...
Sherry there is a group in SW PA. I can't remember the name right off the back but i know that my Brother is actively involved with the group. Give me a...
Hello again all. I saw that we had a new member with a child with Marfans. My son Has Marfan's as well. He is 7 yrs. old and we found out when he was only 4...
Hi Kim, Thanks for the fast response and positive suggestions. Hope you are doing well. Buying clothes for Stephanie has always been an issue. Especially...
Hi Vel, Thanks for the warm welcome. Hope all is well with you. I like the supermodel idea. I've told her that she'll be glad she's tall and thin when she...
Hi Becky, Sounds like Noah has a lot of the same medical issues. Steff has a spooned chest that looks like a hole too. Sometimes gives her trouble catching...
Hello, I'm starting to have some problems seeing. It started to be noticably worse about six months ago. If I look to my far right, I can see an outline of an...
Hi Tabitha, I do not know if seeing a outline of an orb is a lens thing. But I do know that if dislocated lens are causing vision problems that cannot be...
Hi Tabitha, Our marfan eyes are very fragile. Any number of things could be causing what you are seeing. If you lens are completely detached they may be...
This probably means your lens is dislocated or is starting to dislocate. Me right lens is totally dislocated and I can sometimes see it floating, depending on...
Okay I have a quick question for everyone. Do you think genetic testing is good or bad?? Can they cancel your insurance if you have it? would you be...
I myself passed on the genetic testing. They told me I had marf;s and they tolds us what to expect and how I came to have it [spontanous mutation]. Genetic...
... My 13 year old daughter tested negative for Marfan's. Our primary dr just dropped the issue after that, but other doctors still believed she did. After 8...
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