Lani Wilson:  

ers-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 5000 people; however it is grossly under-and/or misdiagnosed: 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.