I am a patient advocate and educator for Ehlers-Danlos Syndromes (EDS), similar connective tissue disorders, and related Rare and complex diseases. 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 develop resilience. I thrive on clear understanding of anatomy and physiology, so to deepen my understanding of connective tissue, Mast cells, fibroblasts, genetics, and related physiology and structures, I returned to college for some Biology courses. I work to ensure the scientific accuracy of the content in the groups that I run to assist communities' medical literacy and effective navigation of the medical care system.
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. In 2015 I pursued a series of population health 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 medical 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. After a few years in Oregon, I'm back in Utah, and thrilled to have been accepted as a member of the Utah State Rare Disease Advisory Council (RDAC) that was first proposed during my 2019 RAN Ambassadorship.
I also participated in the vEDS Collaborative in 2019, to support research efforts to better understand and treat patients with vascular Ehlers-Danlos syndrome. https://www.vedscollaborative.org
I am committed to helping myself and others living with complex conditions gain access to quality care and treatment. Contact me: justine@justinegcase.com
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.