The Ehlers-Danlos syndromes are a group of hereditary disorders of the connective tissue.
More information:
https://www.chronicpainpartners.com
https://www.ehlers-danlos.com

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…
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…
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…