Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 > , I'm not sure it's a 'proven' fact or not, but I do think that > MOST EDSers have low bone density, especially the older ones. Depends on which study you read. The first study said there were more cases of osteoporosis in EDS. The second study adjusted for factors such as weight, activity level, lifestyle, etc. Once these other factors were adjusted for, the rate of osteoporosis in EDS was found to be the same as the normal population. In my personal opinion, I believe that the higher rate of osteoporosis in EDS is attributable to the lack of exercise due to fears of dislocation. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 my hip surgeon says EDSers also wear out many joints quicker than the normal population from the looseness of the joint. My family seems to have very small hip joints in too-big sockets and we all wear out our hips before we're 40! Liza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 my hip surgeon says EDSers also wear out many joints quicker than the normal population from the looseness of the joint. My family seems to have very small hip joints in too-big sockets and we all wear out our hips before we're 40! Liza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 I think you're " right on " Rhea. Low bone density at 19 is not due to diet. Bernie Re: Low Bone Density I too have low bone density, called 'osteopenia'. My doctors were really surprised by the results that my bone density average between my lumbar vertabrae and hips was as low as -1.8 One spot on my hip and two or three lumbar vertabrae were signifigantly worse than that, but with the average all together that includes a few calcium deposits, it worked out to be -1.8 I have had 4 fractures now (and I am only 19 yrs) with the last being a displacement and compression fracture of my L2 vertabrae in May. It wasn't until 6 weeks ago that the x-ray showed healing starting for that fracture. All of my fractures have been caused by low impact, 'normal' falls that anyone else would have escaped with not even a bruise. I am now on a special calcitonin nasal spray and Fosomax (bone loss retarding drug) in addition to calcium supplements etc.. to help stall any more bone loss and fractures. Our family shows a few traits of osteogenesis imperfecta too so that's one more thing the geneticist will be checking me out for. I don't agree that the lower activity level in EDSers is the main cause of osteoporosis in *us*. There's a whole other generation of healthy people out there who spent their childhood life non active playing video games, and then they moved into low activity office or computer jobs in adulthood. These people aren't breaking their wrists arms and backs in low impact falls in their teen years! Perhaps we should have several LARGE (and I don't mean 30 ppl, but maybe two or three thousand) studies done on that generation and their bone density and fracture rate. I do think that a person's diet and activity level does play a part in osteoporosis in the EDS patient, but personally I'm more than convinced that the collagen defect that's responsible for EDS makes EDSers much more 'genetically prone' to **PRE*** menopausal osteoporosis. Just my humble opinion, anyway ;-) I urge all of the females on the board 18 yrs and older to get a bone density done! Normally they only do dexa scans on the post menopausal crowd, but if 19 yr old me can have it... (And I'm a non smoker,no alchohol, healthy eater, ideal weight etc..) It's an easy test to have done, and it's really worth it to have it done, have a baseline to compare with, and get treatment that much sooner if you need it. It just might save you from a hip or back fracture -Rhea To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Not me. I have great bones. Debbi Re: Re: Low Bone Density > , I'm not sure it's a 'proven' fact or not, but I do think that > MOST EDSers have low bone density, especially the older ones. Depends on which study you read. The first study said there were more cases of osteoporosis in EDS. The second study adjusted for factors such as weight, activity level, lifestyle, etc. Once these other factors were adjusted for, the rate of osteoporosis in EDS was found to be the same as the normal population. In my personal opinion, I believe that the higher rate of osteoporosis in EDS is attributable to the lack of exercise due to fears of dislocation. -Barb To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Not me. I have great bones. Debbi Re: Re: Low Bone Density > , I'm not sure it's a 'proven' fact or not, but I do think that > MOST EDSers have low bone density, especially the older ones. Depends on which study you read. The first study said there were more cases of osteoporosis in EDS. The second study adjusted for factors such as weight, activity level, lifestyle, etc. Once these other factors were adjusted for, the rate of osteoporosis in EDS was found to be the same as the normal population. In my personal opinion, I believe that the higher rate of osteoporosis in EDS is attributable to the lack of exercise due to fears of dislocation. -Barb To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
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