Guest guest Posted April 9, 2003 Report Share Posted April 9, 2003 My husband has late onset (age 59) CMT with no family history and no short people (small feet, however). His youngest son at 16 was referred to a pediatric cardiologist, because he had pectus excavatum (caved in chest) and was very tall 6'3 " with spindly fingers, to see if he had Marfan's Syndrome. [i am 5'3' and my huband used to be 6' even.] They didn't have a genetic test but after EKG and Xray, the cardiologist thought he didn't have Marfan's. Jim Nash's letter scares me because it would mean our son is destined to have the disease. My husband tested negative at UCLA for 2 genes but most of the tests are for early onset CMT. My husband's eye sight is excellent. Quote Link to comment Share on other sites More sharing options...
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