Lipedema captured on film

By Tatjana van der Krabben

On June 14, 2014 a Dutch Facebook group launched a short info film on lipedema at the NLNet conference. It’s in Dutch*, which may very well be gibberish to you, but I want to share with you the story of the making of and the message this group and myself as a member of this group would like to share.

In Augustus 2013 a member of the Lipedema Friends and Info Page started dreaming out loud: what if we could do an information film on lipedema in Dutch, something catchy, to raise awareness. A quick search taught us nothing like that had been made. Yet. And that’s when we got ambitious. It had to be catchy, not too long, provide useful information, have a feel good factor, a message, be suitable to incorporate into a lecture for a varied audience and professionally made, please and thank you. Why this long wish list? We could only – hope to – raise enough budget to do one film and the need for material to educate the public, (new) patients and medical professionals was there. It simply had to be versatile and of sufficient quality to take it places.

After that, like pieces of a jigsaw puzzle, everything started falling into place. Someone knew a professional filmmaker who was willing to help and shared our vision. Someone arranged at work we could use a space and facilities there to shoot the film. One of the members of the Facebook page who offered to help is also a board member with the foundation NLNet for lipedema and lymphedema. One thing led to another and NLNet offered us time at their conference to do the launch there. We formed a work group of four and raised the needed funds through crowd funding among the members of the Facebook page. All members were welcome to pitch in ideas for the film, after which I wrote the script. Then we asked members to participate. We got all stages and different ages represented: sixteen gorgeous ladies. We also made a conscious decision to show our legs anonymously and in motion. You know that distinct look of the back of your knee in advanced cases with that extra padding? You don’t see that from the front and moving images are also more attractive to watch. The film therefore shows the legs from all sides.

Every meeting we came to the same conclusion: we wanted motion, movement, energy! Movement became the theme. We need to move forward and we literally want to keep moving. In its wake came the second point we wanted to make: the value of early diagnosis. Catch it early and you preserve (most of) your mobility, energy and your true figure. Although the “spoon scene” explains how daily activities can drain you, we hoped to convey joy as well. Lipedema may interfere at times, but we certainly have a zest for life.

So far so good, but the only pro in da house on D-Day was the filmmaker. Sixteen women, knowing very well they would also be showing their legs later on and not so anonymously in front of this man. Not to mention eventually seeing it back on a BIG screen. But he worked miracles and approached the topic with great integrity and a little humor. Sixteen women, some already knew each other, others we only knew from Facebook until then, but at the end of the day we had bonded. I think it shows in the footage. A little secret from behind the scenes: at some point our chatting was so loud, we disrupted the filming of a scene in the other room. In the end we all sat in the same room to watch the scene being filmed to make sure we kept quiet for a bit!

Last Saturday with the launch it all came together. The group was almost complete, the filmmaker was present and we all got to watch it together. Afterwards we were asked to come on the stage and Henry Scheer, the filmmaker, gave a heartwarming speech and offered on the spot to also help us with an English version. So Henry, we got witnesses! Just kidding, he’s been a great support throughout. This, and the fact several therapists approached me immediately after to ask if they could use the film in future lectures, showed it was a launch in the true sense. And yes, they can use it. This is what the film is meant to do.
We started with a small snowball and now it’s picking up speed. Carry on little snowball. May you travel far and kick butt.

*English version of the film to follow.