About Ehlers-Danlos Syndromes

For general EDS definitions and information, please visit the Ehlers-Danlos Society at the links below. 

  • Please be aware: there are literally 1000's of different connective tissue disorders that can present similarly to EDS. Differential diagnostics are essential for proper treatment and care. 

For practical tips on living with EDS, try the following resources.

About Me

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


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