This week’s episode is one to honor Ehlers-Danlos Syndrome Awareness Month, as well as many of the other poorly understood, under-diagnosed conditions that disproportionately affect women, which share May as an awareness month. This episode is actually a re-run of my interview with Rebecca from episode 03, but with an updated introduction and new links on the episode page.
In this interview, Rebecca talks about the ups and downs of EDS, their long and winding diagnostic process, working 10x as hard to be half as healthy as everyone else, and redefining their value while not being able to work a paying job.
May is also the awareness month for Lupus, Fibromyalgia, Lyme Disease, ME/CFS, Arthritis, Tuberous Sclerosis Complex, Mental Health, and I may still be missing some. Find links to the episodes where we discuss these conditions on the episode page.
Episode Page: http://www.insicknesspod.com/blog/2016/5/4/30-fill-in-the-blank-awareness-month
More information on Ehlers-Danlos Syndrome from the Ehlers Danlos Society: http://ehlers-danlos.com/what-is-eds/
More information about dysautonomia from Dysautonomia International: http://dysautonomiainternational.org/page.php?ID=29
More information on Mast Cell Activation and it’s relationship to dysautonomia from the Dysautonomia Dispatch blog: http://www.dysautonomiainternational.org/blog/wordpress/a-tale-of-two-syndromes-pots-and-mcas/
More information on gastroparesis from the American College of Gastroenterology: http://patients.gi.org/topics/gastroparesis/
Ehlers Danlos Society International Symposium: http://eds2016.org/about-the-symposium/
#UndiagnosedDay Storify: https://storify.com/bimpse/undiagnosedday
NYC Red Party: http://www.periodicinc.org/nyc-red-party/
PDX Red Party: http://www.periodicinc.org/pdx-red-party/
