For general EDS definitions and information, please visit the Ehlers-Danlos Society at the links below.
For practical tips on living with EDS, try the following resources.
I am a patient advocate and educator for Ehlers-Danlos Syndromes (EDS), and related Rare diseases. Before being severely impacted by EDS, I spent 12 years as a Licensed Massage Therapist, and also worked in a Physical Therapy clinic teaching patients how to isolate and engage specific muscles for rehabilitation. The practical knowledge of anatomy and physiology that I gained became a great tool, and I now use it to help myself and others cope with and manage EDS. When my own condition became complicated, I wanted to really understand it. I turned to medical journals, and academic study in Biology to deepen my understanding of connective tissue, Mast cells, fibroblasts, genetics, and related physiology and structures.
I have been an Ehlers-Danlos National Foundation Medical Help Line volunteer, and an Administrator for multiple social media groups that focus on living well with EDS and its comorbid conditions. From 2016 until present I pursued a series of research projects in collaboration with Michelle Hawes, the former Director of the Conflict Resolution Graduate Certificate Program at the University of Utah Department of Communication and a mediator in private practice, to assess EDS patient needs, and support the betterment of our care in Utah.
In 2019 I accepted a position as a Rare Action Network (RAN), Utah State Ambassador to directly support legislation that will benefit the Rare disease communities of Utah; please considering joining your state's RAN. https://rareaction.org
I also began participation in the vEDS Collaborative in 2019, to support research efforts to better understand and treat vascular Ehlers-Danlos syndrome. https://www.vedscollaborative.org
I am committed to helping myself and others with Rare disease gain access to quality care and treatment. Contact me: firstname.lastname@example.org