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We Are Visible – The first feature-length Ehlers-Danlos syndrome documentary

A woman with long blonde hair is measuring oxygen levels of a young boy with blonde hair

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. 

Karina, a woman with short brown hair and a blue scarf
We Are Visible

We Are Visible is a 69-minute documentary about people living with Ehlers-Danlos syndrome. It features six families all around the globe living with different types of EDS. At first, We Are Visible was meant to become a short film for my journalism degree’s dissertation, but I soon realized, 20 minutes aren’t nearly enough time to give an adequate impression of some of the challenges that come along with EDS. 

So I decided to produce a feature-length film. I had no funding, never filmed before, and I didn’t even have a camera back then. The solution? I invested my savings, bought a camera, a couple of the cheapest available plane tickets and I flew to Maryland, USA, the UK, Holland, Belgium, Germany and Malta. 

Trailer 1

One of the scenes that didn’t make it into the film but that expresses quite well how these 14 months of film production felt to me was this one: I am in Holland. I barely had two weeks of a break after my last shooting in Belgium. I film Debbie and her beautiful two young children. I chase after them for a few minutes. My joints hurt, my back is killing me, I am tired, I feel like I am getting a cold. Debbie tells me to put the camera away and to lie down on her couch. She makes me a coffee, and we both just lie there for an hour and talk. 

I don’t see myself as a filmmaker. We Are Visible was a lot more than just a film for me. I met friends. I cried with my friends. I was treated like family. There was no professional distance, no taking any quotes out of context for more drama. We all worked together to produce a film highlighting all their challenges in an accurate and authentic way. 

Trailer 2

It’s a student film, a low budget production (but believe me, it didn’t feel low budget to me at all…), and it was the first time I filmed. There was no team, no PR person. It was me with the support of the amazing people in my film. We Are Visible surely isn’t perfect from a filmmaker’s perspective, but I can assure you, it contains all my heart, all my love, all my admiration for the people in the film, and I gave all I had: physically, emotionally, financially and in any other way. 

For 14 months, We Are Visible was all I focused on, the center of my life. And in the end, I graduated with distinction from my degree and won a few tiny awards for the film as well. It’s interesting because what started as a simple project for my thesis – I didn’t even plan for the film to be published back then – became probably the most important work of my lifetime. 

Well, let’s not get overly dramatic. How about you build your own opinion about the film? It’s on Vimeo, and all income from the film goes directly to the non-profit organization EDS Awareness. 

A lot more information about the film, the cast, awards and more, you can find on the official film website: www.we-are-visible-film.com

You can stream the film on Vimeo on demand HERE.

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