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
CW: eating disorder
In today’s episode I talk to Sofie about her experience in the Norwegian healthcare system as a patient with complex chronic illness. We talk about her experience trying to find a diagnosis that fit her symptoms, how EDS is classified and treated in Norway, and our complicated relationship with weather. In today’s bonus episode, we talk a little more in depth about the interplay between chronic illness and eating disorders, and about the ableism present in many diet communities.
In this week’s episode I talked to Nikki about qualifying and listing for a double lung transplant due to her rare disease LAM. We talk transplant stuff and get Nikki’s insider perspective on the American healthcare system. She actually used to work on the inside of health insurance and has a unique perspective on what the future might hold for the system.Read More
In today’s episode, Chelsea talks about her long term mystery symptoms doctors labelled an unknown rare disease, her complicated relationship with shunts placed to relieve intracranial pressure, her recent Lyme Disease diagnosis that may or may not explain everything, and the lack of knowledge and research that makes that still unclear.Read More
Today is the ninth annual Rare Disease Day, an occasion honored each year to raise awareness around issues related to rare diseases and disorders. Taken together, rare diseases affect 1 in 10 Americans, and affect more people than AIDS and cancer combined. Worldwide, if we all lived in the same place, we'd make up the world's third most populous country. There's a lot more where that comes from, if you're looking for reasons to care about rare conditions.Read More
Monday February 29th is Rare Disease Day 2016, and we're getting the party started early with a special bonus episode of the podcast, honoring the occasion. It's our first clip show!Read More
Below is a list of links to organizations close to my heart, that I recommend giving to this #GivingTuesday. You can also find many more organization on our Resources page. Of course, if you wanted to make a NON tax deductible contribution to something you can always give to In Sickness + In Health! You can also help us out without money by rating and reviewing us on iTunes, which helps other people find the show, and helping spread the word by telling people you know about us and sharing the show on social media.Read More