By Michelle on Friday, June 02, 2000 - 01:08 pm: |
My 14 year old daughter was recently diagnosed with HMS. She experiences a lot of joint pain and she "pops and cracks" constantly. I am looking for basic info. on
the condition and treatment options. Any resource suggestions would be welcome!
Michelle M.
By Sue C. on Friday, June 02, 2000 - 01:08 pm: |
A wonderful source of info, esp from the patients' perspective is this forum. Spend a few hours with your daughter reading postings. You'll find other websites
referenced, such as www.ednf.org. Follow up with these links, which are more medically based.
Basically: good luck and use common sense about everything you do. First of all, don't have her show off what she can do with her joints any more -- this weakens
them more in the long run.
HMS (which may or may not be EDS III) is an orphan-type condition that isn't well-known or seemingly cared about by many medical practitioners. Be very careful
if physical therapy is prescribed -- it might help some conditions or particular joints, but many of us are worse off thanks to following doctors' orders. (i.e. I went to
PT for knee problems and developed hip problems instead of strengthening my knees.) Many of us are also on a constant quest to find a doctor who understands us.
Feel free to post or have her post questions and reactions and findings to this forum. At this point, we're pretty much on our own.