Entries by karinabutterfly

,

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. I feel like this can only be changed by actively and publicly talking about EDS as… Continue Reading Raising awareness for EDS: I was a guest in several podcasts and blogs!

,

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 platforms to speak out about her life with Ehlers-Danlos syndrome and many comorbid conditions. In our interview,… Continue Reading Interview with The Good Place actress Jameela Jamil

, , ,

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 better, and I don’t only see my therapist when… Continue Reading Why I have changed my opinion about therapy as a chronically ill person

,

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 2016. Maybe this text can help you if you are… Continue Reading A letter to myself after getting diagnosed with EDS in 2014

, ,

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 Are Visible is a 69-minute documentary about people living with Ehlers-Danlos syndrome. It features six families… Continue Reading We Are Visible – The first feature-length Ehlers-Danlos syndrome documentary

,

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 in a respectful and accurate way; to show how life really is for people with disabilities and/or chronic… Continue Reading Firsts – A short documentary series featuring artists with disabilities