Black and white image of Karina, a woman with shaved head. She is wearing glitter eye shadow and red lipstick.

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. 

Text: Imagine you are chronically ill and have to deal with regular symptoms, appointments, managing prescriptions on a daily basis... but on top of it, you also need to take care of your apartment, cook, clean, wash, deal with relationships, etc. I'm chronically ill on top of what other people consider everyday life.

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. 

Black and white image of Karina, a woman with shaved head. She is wearing glitter eye shadow and red lipstick. Text: hen I was diagnosed, I wish I would have known that I am allowed to say NO. I don’t have to consider or be grateful for every random piece of advice I get from strangers, who think as a chronically ill person, I must be happy if they even talk to me.

Listen here.

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. 

Karina, a woman with shaved brown hair is standing in nature with lots of green behind her. She is wearing a rainbow-striped summer hat, sunglasses, a backpack with rainbow straps, a black shirt with rainbow-colored letters and smiles slightly. Quote: While we often do our best to fake being well, so that we can have a normal day like everyone else, we have our days ruined by people around us judging us.

Listen on Podbean or Patientworthy.

More to come soon…

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