I am SO excited to finally be able to share some of what we've been working on. We've releasing a new episode every day this week to honor Dysautonomia Awareness Month. Each of the episodes are with dysautonomia patients that have different primary diagnoses and stories to share. We looked at dysautonomia in the setting of autoimmune disease, immune deficiency, the genetic condition Ehlers-Danlos Syndrome, and Arnold Chiari Malformation, a structural defect where the brain meets the spine.
Dysautonomia is a blanket term for conditions that affect the Autonomic Nervous System, which is responsible for all the stuff that's supposed to happen automatically in your body.
"00 Welcome to In Sickness + In Health"
Cara introduces the podcast and talks about why she started the show, what’s she’s learned along the way, and where she hopes the show will go. There’s also some clips of what’s to come on In Sickness + In Health.
The Dysautonomia Series features interviews with multiple POTS patients with different primary diagnoses to give a better understanding of the varied issues we each face.
"01 Dysauto-whatta?! w/ Lauren Stiles"
Lauren talks about her long diagnostic process, misdiagnoses, diagnostic delay, and gives us a crash course on just what dysautonomia is. She is the president of Dysautonomia International, and lives with the autoimmune disease, Sjogren’s Syndrome, and dysautonomia that includes Postural Orthostatic Tachycardia Syndrome (POTS), Inappropriate Sinus Tachycardia (IST), and Neurocardiogenic Syncope (NCS).
"02 Let's Feel Better w/ Ilana Jacqueline"
Ilana talks about failing alternative medicine, how she manages her career, blogging, the horrors of GI testing, crying in parking lots, and attempting wedding planning while living with a very unpredictable, and very time consuming chronic illness. She lives with a primary immune deficiency disease, dysautonomia, and gastroparesis.
"03 Accessibility Means More Than Ramps - Part 1"
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. We had so much to talk about, I had to cut the interview into two separate episodes. Next week I’ll be posting part two, where we talk about Rebecca’s advocacy work toward accessible transportation in Philadelphia, some of the social and economic issues facing the chronically ill and people with disabilities, reconceptualizing disability, internalized ableism, and diversity of disability. They live with Ehlers-Danlos Syndrome (EDS), dysautonomia including POTS, Mast Cell Activation Syndrome, gastroparesis, and several other diagnoses.
"04 My Brain Was Falling Out of My Skull!"
Becca talks about having Giardia as an infant, traveling with an unpredictable chronic illness, having brain surgery—twice, the wonders of high sodium diets, and her video game web series, Millennial Fair. She lives with EDS, Arnold Chiari Malformation, and POTS.
"05 Autoimmunity + Friends"
Cathy talks about grief (especially denial), The Spoon Theory, parenting with chronic illness, how her condition has affected her music career, and what it’s like to be “one of the lucky ones,” by having definitive disease markers in her blood. Cara makes an impassioned plea for you to get a flu shot this year, and Cathy shares two songs that she wrote while processing the grief of her illness. She lives with Rheumatoid Arthritis, Sjögren’s Syndrome, POTS, complex chronic headaches, and Interstitial Cystitis.