Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Is this a number that was stated at the conference? On 7/19/04 10:20 AM, " ceda " ceda > wrote: > > Subject: New EDS Numbers > > Hi all. I'm sure many of you will not be surprised that the number of EDS > Folks is no longer 1 in every 10,000 or 20,000 people. The new number is one > in 2,500. I'll bet that number is going to change again soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 > > Hi all. I'm sure many of you will not be surprised that the number of EDS > > Folks is no longer 1 in every 10,000 or 20,000 people. The new number is one > > in 2,500. I'll bet that number is going to change again soon. I had read the following numbers at Genetics Home Reference. All EDS Types 1 in 5,000 HEDS - 1 in 10,000 to 1 in 15,000 CEDS - 1 in 20,000 to 1 in 40,000 VEDS - 1 in 100,000 to 1 in 200,000 KEDS - 60 cases worldwide AEDS - 30 cases worldwide DEDS - 10 cases worldwide http://ghr.nlm.nih.gov/condition=ehlersdanlossyndrome;jsessionid=6681B6393A3961F\ F00DB84B763581C5A Does anyone know if these numbers are still accurate? -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Laxity and Barb, Yes, Dr LaValle had talked in one of his classes about a study done (I believe in Cleveland recently) that the Dr. results concluded that we are now one in 2500. Dr LaValle did not break it down to which types. I can't remember the name of the Dr that did the study, but it is a name we all know. I'm sure someone else that took the same class will know the rest of the info. There is so much over lapping of symptoms between the types, there are new recommendations for all types. All EDSers should now get checked for MVP and the aorta every 2 to 3 years and type 4 every year. Sorry I can't remember more on the subject at the moment, when this pain settles down perhaps I'll be able to think clearer. Maybe we could get Dr LaValle to write something that can be posted at EDNF so we can take it to our Drs about the recommendations. Cindylouwho Re: New EDS Numbers Is this a number that was stated at the conference? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.