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Behind the Scenes: Meet the Filmmaker

Mid-size shot of a woman with short, brown hair and a pink flower in her hair. She is wearing retro-style glasses and a neck brace and talks to a man which we can see from behind.

We Are Visible is a documentary film about people all around the world living with Ehlers-Danlos syndrome (EDS). 

Furthermore, it also involves a filmmaker that has EDS herself and therefore knows exactly what living with this invisible condition feels like.

My journey with chronic illness started in 2010 when I was 24 years old.

I suddenly developed severe neurological symptoms. For the following four years, I have seen many specialists in Germany, where I grew up and lived back then, and was misdiagnosed several times – mainly with mental illnesses. 

In 2014, I decided to cross borders in search of the real reason for my symptoms. 

I flew to the US and underwent some alternative treatments which failed. As a consequence, I was then sent to a neurosurgeon in Maryland who, by coincidence, was one of a few specialists for Ehlers-Danlos syndrome. Finally, I was diagnosed with EDS, and many comorbid conditions, for example, cervical spine instabilities, dysautonomia, mast cell activation besides others. 

We Are Visible - Meet the filmmaker
In this short video, filmmaker Frank Marx asks me about my experiences during the filming of We Are Visible.

Since then my life has been defined by raising awareness and finding a new purpose in life. 

I had to give up my job as a lab technician due to my disabilities and all of a sudden, many things that had been easy in the past, became a challenge. I found a new passion in writing and became a freelance writer and journalist. When I married my husband and moved to the US in 2016, I was introduced to many writers, filmmakers, and other creative minds, who motivated me to follow my dream. 

I applied for a Master’s degree in the field of journalism. 

Since 2018, I have been studying at Edinburgh Napier University in Scotland, and, in fact, this was the only degree that could accommodate my needs. 

We Are Visible is the final piece of the puzzle: my MA thesis. And without a doubt the most important project of my life.

Do you want to learn more about the people involved?

Get to know Jojo.

Are you interested in the idea behind this film?

Read this.

2 replies
  1. Jen Struk says:

    Thank You for doing this doc. I am a 48 year old living with EDS and have suffered its chronic conditions since infancy and was only just diagnosed. Both my daughters also have it. Medically, I have been abandoned as doctors are overwhelmed and uneducated about this disease. Definitely a struggle that leads to anxiety and depression on top of everything else. Also left in excruciating pain due to the Federal and State crackdown on doctors to stop prescribing opiates even if you never had any non compliance in 20 years. My amazing doctor actually resigned! Thank you for bringing light to this disease, we do need indeed feel invisible.

    • karinabutterfly says:

      Hi Jen,

      thanks so much for your kind words.

      I am so sorry you have been treated this badly. If you want, write me a private e-mail and we can see if I maybe know doctors that could help you. Have you seen the trailers for the film already? I mostly share all the info on Facebook. But there is also going to be a long blog post on this page about trailers and the filming process. Keep your eyes open. The film release is planned for October.




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