Sheilah Kring

  • Sheilah Kring

    Director of Education and Research

Sheilah says, “It was incredibly serendipitous that prior to the onset of my disability that I had spent years working in complex health care needs, disability, advocacy, had two master’s degrees and was working on a Ph.D. researching health care.  I even had great health care and knew some incredible doctors.  Still, even with all of those resources, it took many years and many doctors to finally get diagnosed with EDS and several other related disorders, and I had far too many ‘close calls’ before I got a comprehensive health team and access to the treatments I needed to stabilize things.  I became keenly aware that the difficulty in my journey, even with all of the resources at my disposal and the medical providers who went an extra mile to keep me here, speaks volumes for the countless others who lack those same resources.  Since my diagnosis, I spend much of my free time keeping up with EDS-related research and sharing whatever I can with other patients and providers, as well as administrators, whenever possible. I simply want the current generation to be the last generation that struggles with diagnoses and treatment options for EDS, and I firmly believe we can work together to make that happen.”