... MF. You can then take this to your attorney to be presented to the Judge. I think that you need to contact Amy Kaplan who is a RN and also over the...
Have you ever tried googling some information about each of your symptoms. Two of my girls have Loeys Dietz which is a connective tissue disorder and which...
I live out between Ingram and Hunt pretty much the Kerrville area I guess you could say.  Which area of SA are you in?  John   ... From: Tammy Ranft...
First of all I want to thank all for replying. I do have marfans for sure. I have the pigeon chest, the heart, the joint, the back, and the DE. I know I...
We live in Seguin. It is about 40 miles east of SA. I know there was a support group in SA that was meeting about 2 years ago, but I am not sure if they still...
We just had a meeting on Sunday at the Blue Star Arts Complex in SA. There was just two adults and one child in attendance. This was my second meeting and...
My name is Mary Beth. My son and I have marfans. We found out about 3 weeks ago. Now the rest of my children have to be tested. I have to go in for AAA repair...
Hi Mary Beth, I also have a child with mfs. He was diagnosed when he was 4 and is now 8 . I do not have it and do not know anything about the heart surgery but...
Mary Beth, When my brother had his first surgery they talked about possibly repairing his valve instead of replacing it. They did consider it, however once...
Hi Mary Beth.. I found out 2 yrs ago I had Marfans after waking up in intensive care in Toronto General with a new aortic valve and some grafting. My son (7)...
Thank you everybody that e-mailed back. When we found out that we had marfans, I felt all alone but now I know we are not the only ones and there is hope at...
Hello Mary Beth, My name is Tabitha and I have had my aorta repaired at Methodist in Indianapolis. What they did for me was they put a sleeve over my valve. I...
Hi, I'd like to say I'm really happy to be here, but who is when they just found out they may have Marfan's disease. I'm worried and I'm scared. About 5 years...
I just did the calculation according to the method Carl gave me. Thanks Carl! My arm span to height ratio is 1.062, in other words, my arm span is 1.062 times...
Victor, Hi, I don't recall you saying if you had been to the eye doctor about the floaters. If you have been there please forgive my forgetfulness. I hope that...
Well, I probably can't afford it anyway. For the time being, I don't have insurance. Harvard is kind of far away....I'm in California. But it's good to know...
YOU DON'T HAVE TO GO TO HARVARD, MY SON'S BLOOD WAS DRAWN IN SC AND SENT TO HARVARD. TO TEST THE FIB GENE IS @ 1,000.00 BUT MY SON HAD TO BE TESTED FOR...
Tabitha, Â Â Â Â Â Â Â Â Â Â Â Â Â Â Sorry it took me so long to e-mail back. Can you tell me who did your surgery?Or do you think he would talk to my...
Thanks Vickie, So far, I don't know that I have marfans, but if I do, it'll be awfully handy if I do. My arm span to height is not as much as I thought, only...
How do I get on the chat list? Who do I add to my list. If it's one person I invite them to my chat list, but how do I do it in the case of a group? ...
Most of the time I open chat, add me to your Yahoo contacts (iowamarf) and when I open I usually put it beside my name. If I know you plan to attend I'll try...
I'm downloading yahoo messenger, now. I will send you and invite as soon as it finishes and joing the chat this evening, or whenever the next one is. Iowa Marf...
Mary Beth, The doctor who did my surgery is Dr. John Fedrenbaucher (I don't think it is spelled correctly) with Methodist Hospital in Indy. He is one of the...
Hello, I was told by my genetist that the Marfan's mutation is unique to family groups. It's not like Down's where you can definitely tell if a chromosome is...
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