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.Read More
In episode 01, 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, a nonprofit she started in 2012, which has gone on to raise considerable funds for research in a neglected field, and hosts an annual patient-centered conference that doesn’t follow any rules. We talk about that research and the conference, and how exciting it is to get in a room with 400 other people who get it, don’t think you’re crazy, and might even share their Gatorade with you.
Lauren lives with Sjogren’s Syndrome and dysautonomia that includes Postural Orthostatic Tachycardia Syndrome (POTS), Inappropriate Sinus Tachycardia (IST), and Neurocardiogenic Syncope (NCS).Read More
I am SO excited to finally be able to share some of what we've been working on. We're releasing a new episode every day this week to honor Dysautonomia Awareness Month. 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 when the brain meets the spine.areness Month. I'll be updating this post as we add the rest of the episodes.Read More