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Coming soon: Documentary film about the Ehlers-Danlos syndromes

The Ehlers-Danlos syndromes are a group of rare connective tissue disorders that can affect every part of the body.

We Are Visible wants to show the full picture of the condition including the complex presentation of symptoms, to the complications while searching for a diagnosis, over misdiagnoses and their harmful consequences, but also the daily challenges EDS patients face, and the differences in accessibility of care depending on the area they live at. My documentary focuses on the one thing that unites all patients: Their never-ending endurance to overcome those obstacles and to thrive. It conveys the hope and strength with which EDS patients fight for a better quality of life and care.

Dr. Rodney Grahame, who has worked with EDS patients for decades once said:

”No other disease in the history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome.”

Dr. Grahame, EDS expert

However, this fact is also the reason why EDS patients worldwide came closer together as a community. They are stepping up to raise awareness and knowledge about their condition, and We Are Visible is dedicated to explicitly support all of them.

EDS is an invisible illness just like many other chronic conditions.

And this comes along with another common misconception. How can you be sick if you look perfectly fine? This film will show people of all ages (5 – 60 years old), with diverse backgrounds, different financial standing in different parts of the world that are all differently affected by this invisible condition. I hope that showing all those sides will resolve prejudices other people might have against Ehlers-Danlos syndrome.

EDS patients have to live with physical pain on a daily basis.

However, sometimes being belittled or judged, or not believed in can be worse than the physical pain. We Are Visible will show that EDS patients are some of the strongest-willed people despite their disabilities. While all EDS patients share the rare illness, they are still a variety of personalities and not defined by a chronic health condition. My film embraces these differences and shows how everyone copes in a different way

The contributors of this documentary live in different countries and states.

Therefore, EDS additionally appears in the context of other healthcare systems which lead to new challenges. All single stories fit together as a whole and will be accompanied by expert opinions which give necessary background knowledge about EDS. 

Every one of my contributors is fighting for something:

For instance, for a better quality of life, for better treatment options, for their children, for awareness, or simply for survival. EDS patients are not victims; they are powerful individuals.

They are visible!

Want to see my previous film projects?

Have a look here.

If you want to be the first to know about this film,

follow me on Facebook.

Official Website: www.we-are-visible-film.com

Picture by Frank Marx

18 replies
  1. Misty Poehnelt says:

    Hello, As an EDS patient I would love to know more about you and your film. I am first in my family to be diagnosed and I grew up watching prescription drugs destroy my family. Looking back it starts to make sense. I am in Wi and Tammy Kosbob has started EDS Wi to organize, support & educate about EDS throughout the state. Some awwmazing things happening here!

    • karinabutterfly says:

      Hi Misty,

      thanks so much for your comment. I am happy to tell you more about my film and myself anytime. What would you like to know? I am also the first in my family that was diagnosed with EDS and it has been quite a journey. It took me 4 years to get my diagnosis, and I lost many things that I loved over those years. I was a lab technician in the past, but had to stop working due to my symptoms. I live with lots of complications of EDS (the one that limits me the most is cervical spine instability and lumbar spine instability).

      When my serious symptoms started in 2010, I kind of lost the person I was before. I am sure you know what I mean. For a long time I couldn’t really accept my condition and had a hard time dealing with all the new limitations I never had before. I discovered a strong passion for writing and started to create a blog which led to academic articles about EDS (mostly in Germany) and finally, 15 months ago, I started a MA degree in Edinburgh, Scotland. It’s a distance learning degree and the only program that made the effort to adapt to my needs. I mostly write from home from my couch, but when I heard I could produce a film for my MA thesis it became clear that I wanted to raise awareness about EDS. This film was the biggest challenge of my life but at the same time became the most important things I have ever done. I am so excited about it and also anxious because I know that I cannot (and also don’t intend to) represent every person with EDS. We are all differently affected but I hope this film will at least give an overview about what we go through and how we handle our struggles.

      It’s the first feature-length film I am producing (and I am fairly new to documentary filming overall). So I hope I even can uphold our community’s expectations. But I can assure you, I do my best.

      I am super glad to hear that you are working so hard to raise awareness. It seems that over the last two years, we have made a huge step forward overall.

      Sending you some hugs


    • karinabutterfly says:

      Hi Tina,

      thanks for your comment.

      To be honest, I have no idea yet. This is quite a big project for me and due to my own health limitations, it takes a bit longer than it would for other people. I am also a beginner when it comes to filmmaking (I so far only wrote journalistic articles and did some podcasting). I plan to finish the film by December and then submit it to film festivals (maybe offer it to broadcast). Maybe we could even organize small screenings for our community in different states? I would love for all of you to see the film first. However, this all depends on the outcome. I still learn new things every day and have some great support of professional filmmakers, but I don’t want to promise things I cannot fulfill at the end. I will definitely keep you all posted here on my page and on my social media platforms.



    • karinabutterfly says:

      Hi Freya,

      thanks so much for your comment.

      In my family, I am the first one to be diagnosed with EDS and it was a long journey to receive a diagnosis which is why I felt that my MA thesis has to be about EDS. I hope it will help to raise more awareness.

      All the best to you and your family.


  2. Megan Perry says:

    Thank you for doing this incredible project to bring more awareness to this serious health condition. I have struggled with Ehlers-Danlos too, and it has been difficult. The journey has also been rewarding, as learning how to conquer despite setbacks teaches you a lot about yourself and the world around you. I have been lucky that I have been able to find ways to work around my condition and have had the support of my wonderful husband and 5 children. I was once bedridden for over a year, and now have learned enough about my body to be able to work up to an acceptable level of functioning. Again, thank you for taking on this project. It reminds any of us that are dealing with struggles that we are not alone.

    • karinabutterfly says:

      Hi Megan,

      thank you so much for this encouraging comment. I feel like I should have included many more people living with EDS in this film to represent the whole spectrum. However, financially and physically, I couldn’t. But I still hope all of you will be happy with the end result. It’s my first feature-length documentary I ever produced and I hope I can shoot films about many more conditions in the future. I think there is a lack of representation for many invisible conditions and I would love to be the person to bring some awareness.

      I am glad you found ways for you to function. In my case, it took me quite some time to accept my physical limitations and some days I still push way beyond them.

      Sending some hugs your way


  3. Bruce Riggins says:

    We would very much like to see the film, We Are Visible. We signed up for today’s event, but did not receive the link for watching it. Nov 9 showing is full, but there is no mechanism to add our names to any wait list, even though that is what is suggested.
    Your help is appreciated to guide us to the correct site to either add ourselves to a waitlist or to sign up for a new event.
    Thank you.

    • karinabutterfly says:

      Dear Bruce,
      if you signed up for last Saturday, you are still signed up for November 9. Only the date was changed. But the RVSP list is still the same. So if you did sign up previously, you will be able to watch it on the changed date.Please check your e-mails again. You should have received an E-Mail by The Mighty stating that the screening has been moved to November 9 at 2 PM EST. It is brought to you in collaboration with EDS Awareness. You should have received another e-mail by EDS Awareness with the link to the screening room in November and the exact instructions. If you have not received it, please send me an e-mail and I will look into it. Sorry for the confusion. Best, Karina

  4. Judy says:

    Our daughter and son were both diagnosed with EDS when they were 25. I was thrilled to learn about your film. Getting more people informed about this syndrome is so needed.

    I registered for the October 26th showing in advance but sadly, did not receive any link to be able to see it. The same thing happened for some friends of mine. Now I would like to get on the wait list, but cannot find a way to do it. Can you help?

    • karinabutterfly says:

      Hi Judy, please check your e-mails again. You should have received an E-Mail by The Mighty stating that the screening has been moved to November 9 at 2 PM EST. It is brought to you in collaboration with EDS Awareness. You should have received another e-mail by EDS Awareness with the link to the screening room in November and the exact instructions. So nothing has changed but the date. If you have previously signed up, you are still signed up and will be able to watch it on November 9. Please let your friends know too. If you have not received it, please send me an e-mail and I will look into it. Sorry for the confusion. Best, Karina

  5. Zuly says:

    Hello Karina,
    I was diagnosed with Ehlers Danlos Syndrome back in 2001 when there was hardly any information about it. Then I lived in denial, managing my symptoms, however I could but these past two years my symptoms have worsen and it’s been an uphill battle that even caused me to have to quit my teaching job of 6 years. I fell into a big depression and felt so alone because I was the only one in my family diagnosed with it. So I then created a Facebook group for EDS in Orlando and Central Florida. Within 5 months that I created it, I have 125 members in it. And I’ve gotten to meet others living from it and have been learning so many things from people that I wasn’t aware were possible symptoms or conditions within the spectrum that could affect EDS patients. It truly has helped me a lot to start coping with the changes that are happening in my life. So, I organized a video call with a few members of my groups and of them recommend that I saw the documentary Unrest from Netflix that featured the life and symptoms of M.E. Chronic Fatigue sufferers. The documentary was intense and really shed a lot of light of what patients with that condition go through, so it really hit home with me. I started wondering if someone had created a documentary on EDS and that’s how I came across your website and learned about you “We Are Visible” documentary and I would love to watch it and share it with members of my Facebook group, if possible. Are you planning a streaming in Florida? I really think your film can really help us bring some insight into what we go through, by seeing it in other cases as week. I am eagerly trying to find answer or comfort in my ever do worsening symptoms, so please let me know how it would be possible for me to stream it. ? #zebrastrong

    • karinabutterfly says:

      Dear Zuly,

      Thanks so much for your kind words. I was planning a screening in Florida actually, but due to COVID-19, everything is currently on hold. Would you mind sending me an e-mail via my contact form. This way we can maybe set up a Skype call and talk about possible options to screen it to your group. The film’s official website is http://www.we-are-visible-film.com



  6. Molly Tennen says:

    thank you so much.. i started getting sick at age 18, i’m 20 now.
    my youngest sister also suffered from EDS, yet neither of us were able to get a diagnosis. nobody believed us. last year, at the age of 17, she took her life on july 4th. less than three months after we lost our father.

    after she passed away people finally started to believe me. she protected me and she saved me.


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