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...
I too was told I have EDS, and I'm guessing the same type that your kids have, because only one type has no test and that is EDS hypermobility type. I'd say...
... Duke paid for the Genetic testing for our 4 year old. He has dislocated lenses and "spidery" fingers, but other than that he is not exhibiting many of the...
Our son was diagnosed quite early on - before he was 1 as far as I can remember - His father also has Marfan's so both our boys were checked out from birth....
Hey Celeste, I personally did not have genetic testing, but I had a genetist confirm my diagnosis. I recently just switched jobs and found out that (at least...
My daughter is 13th, she was already diagnosticated with marfan, I'm looking for a good and inexpensively insurance. Do somebody can tell me by experience,...
Yep, Jan 7, 2008 was the day I had my chest cut open, and had my root replaced. Must have worked, as I am still alive.. One year ago today, I was suffering...
Happy Anniversary!!!!  First year is the hardest. This coming St Patricks day will be my 14th  anniversary!! Yikes where DOES the time go?? lol  ...
We use Yahoo IM conference feature. Yahoo IM is a free download if you don't have it yet. Then send a friend request to iowamarf (me). I usually open, and...
Hi. My son just had an echo that showed that his aortic aneurysm had grown a bit since the last time. It is now at 3.8cm. He is 188cm tall and 70.4 kg -...
Julie, I can't answer the z-score questions really as I've never studied them enough to understand and what I do know of them, they don't seem to always make...
Marsha I think you explained that really well. Julie, I do not have great answers to your questions because every case is different. With our son when he was 4...
Thanks for the replys. Chat will be tough tonight, altho I would love to hear other opinions!! We have two computers and three teenagers in the house. If I...
Julie we could chat in the afternoon sometime. My afternoons are free except for Wed.'s , I am home sick today :) I am sure there are others that could make...
Hi. My name is Sheri. I'm a 46 year old mother of two. My son (age 10) and I were both recently diagnosed with aortic anuerysms. We are having genetic testing...
Sheri - Before getting genetic testing, you might want to check your life insurance and health insurance and get them in order, because once you are formally...
Hi Julie- Yes - if it's Loeys-Dietz they will need to do surgery much earlier (I am actually right at the cut-off line now) as the arteries tend to burst more...
Sheri, Â Just so you know, Dr. Dietz is WONDERFUL! ... From: ssstukel <ssstukel@...> Subject: [marfans_support_and_chat] Re: Intro and questions To:...
Sheri,  Just so you know, Dr. Dietz is WONDERFUL! My son see's him and believe me it's worth the trip from NC. Good luck  Vickie ... From: ssstukel...
Vicki - Have you seen him? Tell me! Tell me! We have gotten a bit frustrated at the lack of knowledge about all this. I don't expect every pediatric cardio to...
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