Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Hello everyone, I wrote this to CMT Association. I may be over sensitive...you tell me thoughts? Kay Hello! I was checking out your site about Charcot Marie Tooth. It said, " Therefore, affected individuals can never be sure about the extent of the ultimate severity of their condition. Lifespan is unaffected " . I need it be known; " lifespan " can be affected by CMT. My sister passed away from her diaphragm deteriorating from, CMT...mine is also deteriorating, and I will most likely die because of CMT. I also know others whom have died. I am hoping to see sites like yours, updated so people know CMT can be a fatal disease. Maybe with the correct information... we can get more research! Please check out my site at, www.omegarealty.org and click on " would you like to donate to a good cause " . This site has accurate information, and I hope you will update yours. Thank you! Kay Omega Realty Re: CMT In general, CMT is not fatal and to say that it is would alarm people who do not have any diaphragm involvement. We do say in most of our papers that it is not Usually fatal. We recognize that in rare instances, it can be responsible for a person's death. Sincerely, The Charcot-Marie-Tooth Association Thank you for your response. The problem is.... I know people, that because of sites like yours, that don't want to " alarm people " ... can't get their doctors to understand the deterioration of the diaphragm, and can be a symptom, and most likely, fatal. My sister's doctor told her, her breathing problems had nothing to do with CMT, until a few years later when she ended up in emergency, and almost died..did he do something. She would of most likely lived a longer life had they known CMT can affect the diaphragm and be fatal. What a shame because of yours, and many other sites " don't want to " alarm people " , ...that people like my sister have to go through so much suffering!I'm one of the lucky one's because of my sister's death....the doctor now knows it affects the diaphragm, and because of that knowledge he put me on a bi-pap. My life will be shorten and be fatal because of CMT, but I would rather be " alarmed " and get some help...then have a doctor, not know, and send me on my way without help. Knowledge is Power! Sincerely, Kay Quote Link to comment Share on other sites More sharing options...
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