We didn’t plan it this way, but the release of our documentary film, Complicated, on Apple TV in May feels almost fated. Between Ehlers-Danlos Syndrome (EDS) Awareness Month and Mother’s Day, the timing reflects the very heart of this project that we started nine years ago. To see it come to fruition has been incredible, and I am excited to begin the next phase, which includes clinical education initiatives designed to address many of the difficult topics we explore in the film, as well as provide support for families impacted by false allegations of medical abuse.
There is a lot of talk about the importance of lived patient experience, but for far too long, the surveys and entities collecting this data had a narrow focus. They did not capture, and sometimes intentionally excluded, the full scope of experiences that people are having. This is why our film matters.
Over the past year, director Andrew Abrahams, the families featured in Complicated, and I have been sharing the film at festivals, patient screenings, and medical conferences. The response has been overwhelmingly supportive, something I hadn’t fully anticipated given the raw honesty of the historical care challenges we reveal. Yet the resounding sentiment when the credits finish rolling is consistently the same: “How can we work together to fix this?”
Together is a key word here.
Many of the patients and healthcare providers who attended these screenings shared experiences from both sides of the care gap. The dialogue was deeply productive, and I observed a shared sense of mission. It has been humbling and inspiring to meet so many incredible people hosting their own screening events and advocating for change. I strongly hope this film becomes a tool for people in positions of power to engage in the difficult conversations needed to create new pathways for EDS care.
I’ve had many discussions with healthcare providers who acknowledged they didn’t fully understand what EDS really was, alongside patients in tears sharing stories that mirror many of the same struggles the incredible young people in our film describe so intimately.
EDS Awareness Month feels different this year. As a longtime advocate, I can honestly say I can feel the hope. A flurry of research papers released since last May, along with a broader understanding of the potential mechanisms that may fundamentally impact disease progression, has helped validate the multi-system nature of EDS (something patients have been trying to communicate for years).
The EDS Society is preparing to release its highly anticipated and desperately needed new diagnostic criteria in late 2026, which will hopefully allow patients to finally be diagnosed and treated appropriately. And the University of Virginia has hosted its EDS Symposium and opened the second comprehensive EDS clinic in the U.S. that integrates both medical research and clinical care.
It’s all incredibly encouraging, but we still have miles to go.
I say this with certainty because, in an ironic twist, my youngest daughter recently developed Long COVID, which triggered a cascade of new issues tied to her EDS. Over the past six months, I’ve found myself back in that role as a mom and caregiver, navigating a space that is all too familiar, where well-meaning physicians at top hospitals do not always recognize my daughter’s symptoms as EDS-related. It has been disheartening. I had thought we had made more progress. Which is why this month of May, and the opportunity to raise awareness, still matters so much.
On May 19, Complicated will be available on Apple TV, and I’m grateful for the validation that comes with being on this platform. But our goal is not just to tell these stories, but to ensure that people living with all types of EDS are finally seen, heard, and taken seriously.
And now, the real work begins.
If you or your family have been investigated by child protective services, we would love to hear from you. Please reach out to: ElevateRare.org.
Can’t wait until May 19th? Join Our Special Virtual Screening of Complicated + a Live Meeting with the Families Featured in the Film on Saturday, May 2nd, 2-4pm (EST). Click here for tickets.
