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Does anyone have a child with marfan syndrome? |
Does anyone have a child with marfan syndrome? I decided not to have children, (I have Marfans Syndrome) but I do have a number of friends who have children with the disorder. If I can answer any questions for you, or get you in touch with those people, please contact me. |
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| Related information |
Conservative estimate is 60,000 people in the US have Marfans Syndrome. They are telling us that apx 1 in 10,000 have it. But I think that is based on KNOWN cases and many more go undiagnosed un... Those of us that have it often refer to it as Marfs or MFS. Don't know of any other names tho some have called it Lincoln's disease. ...Here are a series of pictures of persons with marfan syndrome: ... Two of my Grandsons have Marfan. I first went to ask their doctor about the fact that they were tall, and had bad posture. He discovered they have a twisted spine that causes the stoop, and they ... The Marfan syndrome is a heritable condition that affects the connective tissue. The primary purpose of connective tissue is to hold the body together and provide a framework for growth and develop... Try to find a marfan clinic if one is close to you. NMF has a list they will email you. You can request it on their website marfan.org or by calling them at 800-8Marfan. There is a lot of inform... Have you considered Ehler-Danlos or Lowes-Dietz? Or it could simply be a genetic anomaly. Have you ruled out Marfan's Syndrome? ...its autosomal dominant ... |
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