Patient name: Rebecca
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. Check out the episodes linked below for talk about these conditions.
More information on Ehlers-Danlos Syndrome from The Ehlers Danlos Society
More information about dysautonomia from Dysautonomia International
More information on Mast Cell Activation and it’s relationship to dysautonomia
More information on gastroparesis from the American College of Gastroenterology
Featured Episodes related to May's Awareness causes:
Other episodes with EDSers
Cyrena talked about living with Lupus and Bipolar Disorder in episode 13
We talked about conditions of central sensitization like Fibromyalgia in episode 11
Fibromyalgia has also come up in episodes 08, 14, and 24, and I live with it secondary to EDS
I talked *a little* bit about ME/CFS in episode 29
Dior talked about mental health in episode 12, and Heather talked about it in episode 21
We talked a bit about Lyme Disease in episode 24, and you can hear me talk about my own experience with Lyme in my episode of the Lyme Voice podcast
I talked to Nikki in episode 25, and part two of our conversation including her experience with Tuberous Sclerosis Complex in an upcoming episode
And we've talked about various forms of arthritis in many episodes:
Cathy talked about her Rheumatoid Arthitis in episode 05
In episode 08 Beata talked about arthritic pain that has yet to get a diagnosis on top of her Hashimotos.
In episode 09 Ariane talked about her under-diagnosed complex symptoms, including arthritis
Kirsten talked about her Still's Disease/SJIA in episode 10
Dr. Jill talked about her undifferentiated Spondylarthropathy + RA in episode 11
Heather talked about her Still's Disease in episode 21
Jen talked about her osteoarthritis secondary to EDS in episode 22, and I also have it for the same reason
We talked about how arthritis can get in the way of prepping food in episode 23
Leigh talked about living with an undiagnosed form of arthritis in episode 27