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Is there anybody here now who has Marfan Syndrome? |
I am being tested at the moment. So far I have 2 major and 2 minor criteria. I have been doing some reading and have scared myself half to death! Are there any Marfan sufferers here now that I could talk to please? We would be happy to talk with you about Marfans. I am "Owner" of a Marfan support group and also deeply involved in another. Mine is called "Marfan Connection" and we are a relatively new group. and "Marfans Support and Chat" is a more established group with many more members. There are dozens of us who would be happy to share information with you! Plz contact me! Here's a link to the Nation Marfan Foundation- http://www.marfan.org/nmf/index.jsp Place your thumb on your palm. Close your other fingers over the top of it. If your thumb doesn't pop out the bottom of your fingers you probably don't have Marfan's I do not have it but I know a good bit about it. |
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It is entirely possible. Keep in mind that there are a number of connective tissue disorders that can have the same (or similar) symptoms. I have no idea what the cost would be to have genetic te... People with Marfan are typically tall, but not always. Here is a good web site for you. ... I am trying! At least I think you are the same person! If not contact me ASAP and I will see about etting you into one or both of our Marfan Chats! If you are the same person we just don't s... Yes, I have it, my sister has it, my mother had it. I am also part of 2 support groups, so if you would like to meet a couple dozen or so other people with Marfans. please feel free to contact me ... Yes, I worked with someone who had it. Marfan syndrome is a genetic disorder that affects the connective tissues of the body. For some reason it has a predilection to affect the eyes, the joints, a... 1 in 5,000 people in the USA More than 200,000 people are affected by Marfan syndrome. It also affects the cardio vascular system. DNA is a direct expression of what we put into the bod... Our son's been tested for Marfan's many times, since he has many of the physical indicators. For some time, various specialists were kind of on the fence over whether he might have it, so... ... |
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