Hi, Katherine,

I've just been diagnosed, too. I've been searching the web for
information. Being a "rare" disease, the information is somewhat
limited, but seems to saying pretty much the same thing. I've joined
one site ($15.00 for access to message area)but many are free. The one
I joined seems to have quite a bit of activity on it is:

http://www.ednf.org/

Have you done a search on "ehler danlos syndrome"? I got a lot of
websites listed, but sometimes you have to dig a little to find it. We
are not through the entire diagnosis process yet, but I suspect mine is
the hypermobility type as well.

Children's in Minneapolis is a fantastic medical facility. My sister-
in-law went there with her cystic fibrosis. I would have a great deal
of confidence in them.

Best of luck.

Ann...another newbie

--- In ehlersdanlossupportclub@yahoogroups.com, "hipsfish"
<hipsfish@y...> wrote:
> Hi,
> I am trying to find out all the info I can about this syndrome. My
> daugther is 9 and was just diagnosed a week ago with EDS
> Hypermobility. They feel she got it from me as I show all the signs
> but thought I was just getting old and painful. My daughter is
having
> a tough time getting all these appointments set up and still trying
to
> start her first few days of 4th grade. Any help out there or words of
> encouragement would be appreciated. We are currently being cared for
> at Children's in Minneapolis.
>
> Thanks,
> Katherine