lebenmiteds

At the end of 2016, I was diagnosed with Ehlers-Danlos syndrome. It brought up a lot of questions and uncertainty, but it also helped me piece together countless tiny puzzle pieces into a very complex picture of my health.

Since fall 2019, I’ve been speaking publicly to raise awareness for this rare condition, turning my negative experiences into something that can help others – whether they live with EDS or with any another chronic illness.

I didn’t stop during the pandemic and shifted my focus to social media. Today, I even run a Patreon under the same name: @lebenmiteds (German: lifewithEDS)

From summer 2023 to fall 2025, I spent the majority of the tiny in hospital through out Germany. I’ve had over 30 procedures  because of complications caused by Ehlers-Danlos syndrome.

Now I’m sicker than ever, but I’m also more determined than ever to speak openly about my life with this rare genetic disorder. 🗣️