It took nine years to get to that Red Carpet. In late February, our documentary film, Complicated, premiered at the prestigious Slam Dance Film Festival in Los Angeles.
The film is a call to action, an expose of some of the darker challenges that young people and their families living with complex symptoms of Ehlers-Danlos are encountering in our dysfunctional healthcare system including gaslighting, access to care issues, psychological misdiagnosis, and allegations of medical child abuse. These multi-layered problems may be quietly known in EDS circles, but certainly not to most of the world, and definitely not in Hollywood.
The buzz was palpable as Director/Producer Andrew Abrahams, Editor Alex Albers and I fielded questions from the film industry press, trying to summarize our documentary as compelling and concisely as we could into short and usable sound bytes. It was not an easy task and it felt like an awesome responsibility. I knew we were being given a chance to speak and do something that so many in the EDS community have been trying to do for years – get the world to care about what is happening to patients and families struggling in our highly specialized and broken healthcare and child protection systems.
We were not on that carpet alone.
Sue Pinkham from the Coalition Against Pediatric Pain, the non-profit that provided initial funding, and several of the mothers featured in the film were with us to celebrate this exciting achievement. These women whose children and families spoke up in interviews deserve nothing but gratitude as they bravely allowed our cameras into their lives to film during some of their most vulnerable and difficult days.
I kept my sunglasses on to hide my emotions that also weighed heavy at times, when my thoughts shifted to our incredible loved ones no longer able to stand beside us. Spoiler alert – some of the young women we have featured in our film passed away from complications of conditions associated with EDS. Their loss fuels the drive and the urgency to get this story out. They should have been standing on that carpet with us, and their absence felt particularly sharp that day.
We felt the support and camaraderie of many EDSers in attendance, with special thanks to The EDS-West Connect patient group for helping to spread the word in the community.
Dr. Chip Norris and several members of the MUSC Norris lab were also there, along with geneticist Dr Richard Boles. The dedication of healthcare providers like them is beyond appreciated. Their pioneering work and commitment to validating the patient experience is helping to lower the dividing wall of medical controversy that has long maligned Ehlers-Danlos Syndrome along with the lack of funding, research and respect that this not so rare genetic condition has received in medicine.
Making this film was anything but easy. It was difficult to fund, and challenging at times to film. And honestly, it includes many raw and emotional moments that may not be easy to watch. But in a way, that feels fitting—because living with Ehlers-Danlos Syndrome is rarely easy either.
What was easy, though, was naming the film. It practically named itself.
The condition, the symptoms, the diagnostic journey, the challenges in healthcare and child protection are nothing but complicated. No other title captured it better.
In a time when the world feels especially chaotic and many people simply don’t have the bandwidth for anything “complicated,” me and the team at Open Eye Pictures hope the experiences of these incredible young people and their families serve as both a wake-up call for medicine and a powerful catalyst for change.
Our hope is that patient communities, and professionals in medicine, mental health, child protection, and the legal field, will use this documentary as a tool—to educate, to advocate, and to inspire legislative action that protects families.
How You Can Help
We look forward to announcing the film’s release on streaming platforms very soon.
In the meantime, there are many ways that you can get involved with the mission of the movie:
Please follow us on Facebook and Instagram for updates, impact stories, and information about our growing educational initiatives. You can also share your experiences of living life with EDS on your own social media and tag us, or use the hashtag #ComplicatedTheMovie #Slamdance2025 #IamComplicated
Host a Screening. We are hoping to partner with nonprofit organizations, medical educators and groups interested in hosting live in person screenings. For more information email us at mail@openeyepix.org
We are also working to raise funds for the educational impact plan and are looking for sponsors and partners to support educational screenings. If you have connections with corporate or other stakeholders who may want to be part of this effort, please email donna@Tcapp.org
Complicated can also be seen this Summer in select states soon to be announced as part of the Unstoppable SlamDance Road Show. Details to be released soon!
Donna Sullivan
May 2025
