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Do I have Marfan Syndrome? |
I am 6'3" (not particularly abnormal for my family - dad is 6'2"), my arms are very long (6'8" armspan) I have large hands and feet (size 15) and I have a chest indention (pectus excavatum). My joints are not loose at all, my eyes are normal, and my face is not long and narrow. I am not extremely skinny, but am somewhat slender. I do not know of any family members that have had Marfan's. I've always kind of wondered if I have Marfan's. Could anyone tell me the likely that they think it is that I have it? Should I get tested? How much does it cost? 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 testing done. Your best bet might be to see a cardiologist that has some knowledge of the syndrome. To find one you can contact the National Marfan Foundation via their web site. You may have the Syndrome. Try WebMD online. Probably better off seeking a Medical Evaluation... Your height sounds like runs in the family, you don't however mention the other items running in the family. Marfan could be a possibility but without more information is hard to say. The eyes aren't always affected or if so the markings not always recognized by unfamiliar doctors. With Marfan you have to have so many symptoms but NOT all, so don't let anyone say it isn't possible because you don't have one of them (ie skinny/lanky). The best way to find out is seeing a group of physicians. There is a DNA test that costs usually $1500 and more and are not always correct unless family member with Marfan to compare to. Have an easy test called an echo cardiogram to look at your heart. With your height and long arms it's possible that you may have Marfan's. The echo will show if you have a dilated aortic root and mitral valve prolapse....you could also have a coarctation of the descending aorta. None of these are life - threatening but they are indicative of Marfan's syndrome. I dont think you have it...if it doesn't ru in your family, its hard to get it...but i would get tested just in case |
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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... ... Me again. Can't give you exact numbers, but Ii can tell you that there are around 350 people registered for the Houston Texas areas mailing list. And I would venture to say that for every ... |
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