A woman stands on a wooden walkway of a lake and looks into the distance with a threatening dark and cloudy sky above
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Chronic Illness, the bad days & coping

“Wow, I feel like my condition has stabilized a bit. Finally, I can take part in regular life again!” I thought a few weeks ago. Life has been challenging throughout 2020. Actually, challenging isn’t even the right word. It has been a…
Black and white image of Karina, a woman with shaved head. She is wearing glitter eye shadow and red lipstick.
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Raising awareness for EDS: I was a guest in several podcasts and blogs!

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.…
Karina, a woman with super short, shaved hair sits in front of a door. She is wearing red lipstick and large silver hoop earrings
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Learning to accept life with a chronic illness.

It is not easy to live with a chronic condition. All of a sudden, your whole life changes, and nothing is like it used to be. You fall into a big hole that does not seem to have a bottom, and it is challenging to get out of it again. However,…
A black and white shot of Jameela, a woman with long black hair who rests her head on her hand
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Interview with The Good Place actress Jameela Jamil

I recently had the pleasure of interviewing actress and advocate Jameela Jamil for ABILITY Magazine. Jameela Jamil is an advocate for social justice, body neutrality, LGBTQ rights, and for a while now, she has also been using her public…
Karina, a woman with short brown hair and John, a man with a suit. Text: New newsletter. Funny Bone News
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New Newsletter: The Funny Bone News!

Because with EDS, every bone is a funny bone. John, the CEO of EDS Awareness and a dear friend of mine, asked me to send out this new newsletter once a month. It will include useful information about all things EDS: resources,…
Karina, eine Frau mit abrasierten Haaren, steht in ihrem Garten. Sie trägt einen schwarzen Hut, große silberne Ohrringe und roten Lippenstift.
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Why I have changed my opinion about therapy as a chronically ill person

Only two years ago, I would have never considered therapy. Well, I guess life changes, and even my stubborn self can change her mind. Up until today, I have a bit of a love-hate relationship with therapy, but I feel it changed my life for the…
Karina, a woman with short brown hair is smiling, her eyes small from the sun in her face. She is wearing a neck brace and her flower tattoo on her shoulder is visible
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A letter to myself after getting diagnosed with EDS in 2014

This is a letter I wrote to myself right after getting diagnosed with EDS in 2014. It’s all the things I would have needed to hear from doctors, friends and family. And it’s also advice I gave myself. It was published by The Mighty in…
Karina, a woman with an almost shaved head stands in her garden. She wears a shirt with polka dots and a sweater with skulls.

Let’s get real. This is how 2020 really was for me.

Over the last weeks, I got many kind messages from followers of my blog, often saying, “The way you handle your life with all your conditions is so inspiring. How do you do this?” Let me try to give you an unfiltered insight into my life…
A woman with long blonde hair is measuring oxygen levels of a young boy with blonde hair
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We Are Visible – The first feature-length Ehlers-Danlos syndrome documentary

Ah, what’s there to say about my first feature-length film, We Are Visible? It’s probably the most important project I ever took on, and I poured all my heart and energy into it.  Let’s start from the beginning.  We…