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.
More to come soon…