White letters on black background: You are faking it

Many of the people who know me well would tell you that I am not a person that can do ”short.” I like to talk a lot, prefer to write long articles – the more words, the better, and love to involve more than one person in order to show a variety of perspectives. 

These are all the reasons why my documentary We Are Visible has not only one, but three trailers, and I let you choose your favorite. 

We Are Visible is a feature-length film about six families/individuals with Ehlers-Danlos syndrome living all over the world. I found it impossible to give them all the space they deserve in one trailer, and while trying to put THE one together, two others developed. 

Unconventional? I know. But then this whole project doesn’t quite follow the rules of standard journalistic practice. 

Now, please meet my amazing contributors.

Trailer 1 

Trailer 2 – my favorite

Trailer 3 – or more of an introduction

Find out more about We Are Visible 

here.

10 replies
  1. Michelle Van Keulen says:

    My 11 year old son has EDS, he has a 504 for school but the teachers still do not understand what he goes through everyday. How can I get them to understand?

    Reply
    • karinabutterfly says:

      Hi Michelle, I am so sorry your son’s teachers don’t understand. Unfortunately, I am not much of a help here because I do not have children. However, maybe you could contact the helpline of The Ehlers-Danlos Society or EDS Wellness for help with this. I hope my film helps to make people understand EDS better, and it actually has several children and teenagers included.
      Gentle Hugs,
      Karina

      Reply
    • Michal says:

      Hi Michelle, I‘m a mom of a son with h EDS, my second one is still with ‚suspicion soft tissue disease ‚… both had and sometimes still have CRPS (Chronic Regional Pain Syndrom) due to EDS in addition… so schooling wasn’t easy, but manageable. The constant communication with the teachers, educating them helped. I guess every county has its own laws and regulations regarding schooling & handicap… we live in Switzerland. If you want, we could talk about it… perhaps some ideas could help?
      My sons both couldn’t walk anymore, we found help through writing an email to a doctor in the USA who gave us a contact in Germany, where both of them were in rehab. Today they both are most of the time in school, ie the older one at the University. Yes, pain accompanies them day by day, but both of them live a full live, socially and academically. And the school is a main factor of they’re ability to cope with every day’s life. I wouldn’t want to state my mail-address/phone number openly, but if you’re interested in exchanging information, , perhaps Karina will connect.
      In any case: I wish you all the best and lots of strength!!!

      Reply
      • karinabutterfly says:

        Hi Michal,

        I am happy to connect you. Please send me a private message with contact details you want me to forward to Michelle.

        Best,

        Karina

        Reply
    • karinabutterfly says:

      Hi Amberly, 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

      Reply
    • karinabutterfly says:

      Hi Heidi, thanks for your interest in my film. If you have a look at the official film website: http://www.we-are-visible-film.com, you can find all current events where you can watch the film there. In the future, the film will also be available on a streaming on-demand platform. Best, Karina

      Reply
    • karinabutterfly says:

      Thanks for your interest in my film. Actually, you can find all the information on the film’s official website http://www.we-are-visible-film.com.
      It has just been released a few months ago and we are currently in the process of setting up screenings all over the globe. If you look at the event section, you can see where the film will be shown next:
      https://we-are-visible-film.com/events/
      Unfortunately, due to the recent pandemic, most of the events had to be postponed, but they will happen whenever this is over.

      For this year, the film will only be viewable at those events I mentioned. After the film festival season – and depending on if we make it into one or not – it will also be available on a streaming on demand platform for everyone to watch it online.

      Stay safe!
      Best,
      Karina

      Reply

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published.