Ehlers-Dan… What? Most people – and sometimes even medical professionals – do not know how to spell Ehlers-Danlos syndrome at all, let alone that they would know anything about the various symptoms that are associated with the rare illness. I feel like this can only be changed by actively and publicly talking about EDS as much as we can. I have been using my platforms to generate more awareness for a long time and found that a crucial factor to raising awareness is to connect with other people with a similar mission. So over the last few months, I spoke with amazing advocates with varying chronic illnesses and disabilities and did some guest interviews on several German and English platforms. (I am only sharing the English ones here – switch the language to German if you want to listen to the German podcasts as well).
Beyond My Battle Blog
With Beyond my Battle, I talk about the small and big challenges of living with Ehlers-Danlos syndrome, how I cope, the effects EDS has on my mental health and much more.
Read here: BMB Blog
Chronic Illness Support Podcast
I was a guest on the Chronic Illness Support podcast with Samantha Bowick. In this episode, we spoke about what living with EDS really feels like, what I would tell other people newly diagnosed with EDS, why I became an advocate, and how I cope.
Wait, how do you spell that?
I spoke with Colby on Patient Worthy’s Rare Disease Podcast Wait, how do you spell that?
Colby asked me about my recent and future projects, why I made my film and what I wanted to achieve with it, why being invisibly disabled leads to so many problems, and much more.
I was a guest on NORD’s podcast! Check out how they described the episode: “Kicking off Season 3 of NORDpod, I am joined by Karina Sturm, a disabled journalist, blogger, author, and filmmaker who tries to connect with chronically ill people around the world and spread the word about Ehlers-Danios Syndrome and other chronic illnesses. From giving up her job as a research associate in 2010 to cashing out her life savings to come to the US for better care, Karina has managed to adapt her life around her symptoms and is the accidental advocate you need to hear to know. Through a necessary pivot to journalism, Karina is now one of the most vocal rare disease activists around, and her blog, “Holy Shit I Am Sick,” is read by thousands. Her must-watch film, “We Are Visible,” is so multi-award-winning and critically acclaimed, there’s an endless scroll of credits on the homepage. This is how you advocate. Enjoy our conversation.”
Listen on Apple Podcast.
Chronically Healing Podcast
Episode 106: Hustle Culture, Stress and Chronic illness. “We absolutely loved hearing from other spoonies out there and we got INTO IT with Karina today. We chatted about her experience with multiple chronic illnesses, we ranted about hustle culture and how it’s negatively affected the chronically ill for many years.”
Chronically Healing Website