Please check www.ednf.org to read more about the hypermobile type of Ehlers-Danlos Syndrome. The hypermobile type predominantly affects the joints.

The Classical type predominatly affects the skin.

And, the Vascular type predominatly affects the arteries and veins.

Each type is separate and distinct from the others - meaning that if your daughter does not have fragile skin that does not mean she can't have the hypermobile type.

Of course there are a LOT of other issues involved such as you have described in your posting. That is why I have responded with this information for you.

In particular, us hypermobile types (yes, I have HEDS) tend to have sever and widespread chronic muscle spasms and hold tension throughout our body - because the muscles are trying to compensate for the laxity of our joints. I hope this makes sense to you and that you will look into this.

I wasn't diagnosed until age 35 and if I had been diagnosed earlier my quality of life might be a lot better now. Best wishes to you and your daughter!
Mags

Ehlers-Danlos Syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders. It is a progressively debilitating syndrome that can cause loose unstable joints which dislocate easily, skin fragility (tears and bruises easily), and/or organ fragility (major organs, veins and arteries can spontaneously rupture). EDS affects about 1 in every 5000 people; however it is grossly under- and/or mis-diagnosed: some 80% of people with EDS do not receive a proper diagnosis or treatment within their lifetime. We are working to change this statistic by raising awareness of this disorder within the medical community and in society at large. The EDNF is a 501(c)(3) nonprofit organization.