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, important…
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…
Belo, a young man with short brown hair sits on beautiful stairs in a garden covered in red roses. He smiles and has one hand on his black guide dog
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Firsts – A short documentary series featuring artists with disabilities

During one of my internships, I worked with Belo Cipriani, a blind journalist and advocate for people living with disabilities. Belo recently established a publishing house called Oleb Books with the mission to represent people with disabilities…
Karina, a woman with short brown hair is wearing a black hat and huge earrings
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How it all began: Getting diagnosed with Ehlers-Danlos syndrome

Oh Gosh, I feel like I have told this story too many times, but you are new here, so I might as well share it again. So this is how it all began and the reason why you are here, on my Blog, today. I try to keep it short, though.  Am…