I talked to Australian Appearance Activist and writer, Carly Findlay, about her experience living with Icthyosis, telling our stories on our own terms, the value of our personal information, identity, and the Australian healthcare system. She also told me about living through my worst nightmare when one of her photos was misused and went viral on Reddit.Read More
In today’s episode, Alex talks about his experience with Hypertrophic Cardiomyopathy, having open heart surgery at 16, almost dying a couple times, his work in assisted living, and—my favorite topic—death in our death phobic culture. In the bonus episode he answers my Big Healthcare Question, and we talk about all of my arrhythmias and my own heart mysteries.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
Unfortunately, a lot of people still have never heard of dysautonomia, or the various conditions that fall under its umbrella. Dysautonomia is a blanket term that covers conditions resulting in autonomic dysfunction. Your Autonomic Nervous System is responsible for a lot of the things that are supposed to happen in your body automatically; things like your heart rate, blood pressure, body temperature, sending your blood to where your body needs it the most at any given time, and can affect just about any system in the body. For many with autonomic disorders, it can make the simple act of standing up a very dangerous game.Read More