Guest guest Posted May 14, 2000 Report Share Posted May 14, 2000 In a message dated 5/14/00 10:21:57 AM, liliwigg@... writes: << My understanding is that it is the most common inherited neurological disorder - it would seem that it is really not 'rare'. Perhaps just the 'visibility factor' - CMT just isn't as well known as say MS, for example, is that how that 'rare disorder' title happened? >> http://www.rarediseases.org/welcome.htm What is A Rare Disorder? A rare or " orphan " disease affects fewer than 200,000 people in the United States. There are more than 5,000 rare disorders that, taken together, affect approximately 20 million Americans. One in every 12 individuals in this country has received a diagnosis of a rare disease. Since its inception in 1983, NORD has served as the primary non-governmental clearinghouse for information on over 5,000 rare disorders. NORD also provides referrals to additional sources of assistance and ongoing support. NORD is a charity and continues its mission through the kindness and generosity of our donors. ============== I believe the count is 150,000 CMTers or so now. Of course, many CMTers have not been diagnosed yet, especially type 2, but until the medical community is more aware of CMT nothing will change. I still meet people regularly who have been seeking a diagnosis for years, but who have been put off by doctors who don't know to check for CMT. And so often, if one person is diagnosed a whole flock of family members become aware that they have CMT as well, not just funny feet. Many don't bother to get a formal diagnosis since there is no real treatment or cure, and it can affect their insurance. Thus they are not included in the statistics. It's the proverbial vicious cycle. At NORD, type in dystrophy and you come up with 174 diseases (including CMT because of MDA). Type in atrophy and you come up with 217 diseases, including CMT. (There is overlap) Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2000 Report Share Posted May 14, 2000 I have a problem with " most common inherited neurological disorder " because I believe " most common " could be understood wrong. The disease really is rare because only 0.4% of the worlds population have it. And because there are not many neurological disorders it is said that cmt is the most common. But fact is that most doctors in this world never will meet a patient who has cmt. In Germany there are about 32.000 people (statistically) who have cmt but how many of them know about them having the disease? So, in reality most of the patients never even heard about cmt and the doctors also couldn' t tell them because they don' t know. It is like a wheel. MS has a lobby know because it was made known to the public. This is what should be done with cmt also. Bye, Gretchen Glick schrieb: > Hello Kat, great German find on CMT at onelist! I too am a bit miffed > when I see wrong info! Now, this is bugging me, but for you or anyone > else, why is CMT 'classified' as a 'rare disorder'? My understanding is > that it is the most common inherited neurological disorder - it would > seem that it is really not 'rare'. Perhaps just the 'visibility factor' > - CMT just isn't as well known as say MS, for example, is that how that > 'rare disorder' title happened? > > Gretchen > > ------------------------------------------------------------------------ > Make new friends, find the old at Classmates.com: > 1/4052/10/_/616793/_/958324834/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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