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. I also have bone-on-bone and bone spurs and large areas of herniation in my cervical spine, diagnosed as moderately severe cervical spinal stenosis. I wasn't all that surprised that Dylan had low bone density. Cindy said Brady also has cervical spinal stenosis, which I 'assume' means that he too has low bone density. In fact, if Cindy has never had a bone density test for HERSELF, I think she should be having one done, since they said there's not doubt she has EDS too! Love Lana > I thought it interesting that the Doctors said Dylan probably has low bone density. > > had a bone density test not long ago because she broke her ribs from coughing. > It confirmed that she does have low bone density. > > For now, she just has to take calcium pills. She has to be rechecked often, they say. > > She was x-rayed in the urgent care last week after getting bounced around in her friend's jeep while 4-wheeling. It showed no spaces between her vertebrae in the thoracic area, and what looked to be the start of bone spurs. > I'm not quite sure what to think about that! > > I haven't heard anyone mention low bone density in EDS before. But, the doctor in urgent care was asking all about me and , cause he's treated many times before, and mentioned EDS. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 > I haven't heard anyone mention low bone density in EDS before. But, the doctor in urgent care was asking all about me and , cause he's treated many times before, and mentioned EDS. , There are two studies on bone density in EDS. You can read them both here: http://www.edstoday.org/newsletter/Issue3.htm Click the link for Full Text Online. It will open the PDF file of the Spring-Summer issue of EDS Today. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 http://www.edstoday.org/newsletter/Issue3.htm > I am not able to read these articles. Joanna, You need to have Adobe Reader installed on your computer as this is a PDF file. It also is a very large file and takes awhile to download. To download Adobe, go to: http://www.adobe.com/products/acrobat/readstep2.html -Barb Quote Link to comment Share on other sites More sharing options...
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