Over the last year, the Ehlers-Danlos Syndromes have been increasingly present in media. Several films have depicted different aspects of the lived experience of families with Ehlers-Danlos Syndromes and comorbid conditions around the globe. The following is a dynamic list of documentary films on EDS and its comorbid conditions based on the release date.
Ehlers-Danlos Syndromes
Complicated (tbd): “CHILDREN SUFFERING AT THE MARGINS OF MEDICINE
Kids with rare and complex diseases whose care is too complicated for mainstream medicine are being tossed around from specialist to specialist, abandoned and even accused of psychological disorders or of faking their illness. They often live with chronic pain and other symptoms, but are unable to get the help they need because they are considered too medically complex, or financially and legally risky—or, worse, because they or their parents may not be believed in the first place.
COMPLICATED focuses on one of the most prevalent of these conditions, a connective-tissue disease called Ehlers-Danlos syndrome (EDS), which creates multi-systemic challenges for patients and physicians. Disabling and in some cases fatal, EDS is estimated to afflict about 1-in-500 people worldwide (so it may not be a rare disease after all). What differentiates EDS and other related illnesses is their invisibility—a lack of awareness and accurate diagnostics—and the perilous medical and legal maze in which pediatric patients, their families, and even the doctors who agree to treat them, find themselves adrift.
Desperately seeking multiple opinions and specialists, many parents of “complicated” kids (especially mothers) are suspected of over-medicalizing their children and risk being charged with medical child abuse, and losing custody or parental rights.
COMPLICATED takes the viewer into the hidden world of children coping and trying to live their lives with rare, complex and invisible illnesses, parents facing impossible choices to help them, and providers who dismiss them as “too complicated” or risk it all to save them. (86. min)”
Website: https://openeyepix.org/complicated#complicated-1
CPP has had the honor to preview the film: https://www.chronicpainpartners.com/complicated-the-must-watch-documentary-on-ehlers-danlos-syndrome/
Take Care of Maya (2023, Netflix): “Take Care of Maya,” which unveils the heart-wrenching journey of the Kowalski family as they confront and challenge wrongful child abuse allegations. Directed by Henry Roosevelt, also known for his role in “The Social Network,” the documentary delves deep into the lives of the Kowalskis, shedding light on the devastating consequences of false accusations and the relentless fight for justice. “Take Care of Maya” premiered at Tribeca Festival and was nominated for Best Documentary Feature. The documentary was released on June 19 and since then has ranking number 2 in all Netflix films on June 24 and received over 1000 ratings on IMDb.
Also read CPP’s article on the documentary: https://www.chronicpainpartners.com/new-netflix-documentary-take-care-of-maya-highlighting-wrongful-child-abuse-allegations/
The Body is a House of Familiar Rooms (2023, Short, PBS): “A magical-realist window into life with Ehlers-Danlos Syndrome. Combining paintings and live-action footage to reveal the emotional depth of Samuel Geiger’s physical world–with his partner, painter Lauryn Welch– while exploring disability, love, and the forms they take within the bodies and spaces we are given.”
Link to full version: https://www.pbs.org/video/the-body-is-a-house-of-familiar-rooms-l43lis/
Bend or Break (Short, 2021): “Bend or Break is an award-winning documentary based on the memoir of Mitch Martow. The story begins with a 14-year-old boy’s struggle with sudden chronic pains and takes us on a journey of multiple misdiagnoses to finally understand the actual disease (EDS – Ehlers Danlos Syndrome).
Ehlers-Danlos syndrome is a set of illnesses that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues. Ehlers-Danlos syndromes are presently divided into thirteen categories. Pain and weariness are nearly universal in the Ehlers-Danlos syndromes. The total prevalence of Ehlers-Danlos syndromes ranges from one in 3,500 to one in 5,000 persons. The hypermobile version variant (hEDS) is by far the most prevalent.”
Watch the full-length film here:
We Are Visible (Feature, 2019): “But you don’t look sick!” – ‘We Are Visible’ gives a voice to a neglected community: People living with invisible disabilities, specifically in the context of the rare condition Ehlers-Danlos syndrome (EDS). It showcases the challenges this community faces due to misconceptions surrounding invisibly disabled people and conveys the strength and resilience with which this community fights to become seen. Our condition might be invisible, but we are not! We Are Visible!
We Are Visible is Chronic Pain Partners’ own doc and can be watched on our Vimeo channel for a small fee benefitting Chronic Pain Partners: https://vimeo.com/ondemand/wearevisible
Read more about We Are Visible HERE.
Issues With My Tissues (Feature, 2018): “In 2011 at the age of 31, despite having barely walked more than three miles at a time before in her life due to Ehlers-Danlos syndrome, Lara Bloom decided to try and become the first person with EDS to walk the London Marathon. The documentary follows Lara’s journey and features interviews with medical professionals, families with EDS and individuals who have suffered from misdiagnosis. […] A moving, informative documentary explaining the issues and struggles of those with all types of the Ehlers-Danlos syndromes and related disorders.”
Watch the full documentary on YouTube.
Comorbid Conditions
Unrest (2017, Feature about ME/CFS): “Jennifer Brea’s Sundance award-winning documentary, Unrest, is a personal journey from patient to advocate to storyteller. Jennifer is twenty-eight years-old, working on her PhD at Harvard, and months away from marrying the love of her life when a mysterious fever leaves her bedridden. When doctors tell her it’s “all in her head,” she picks up her camera as an act of defiance and brings us into a hidden world of millions that medicine abandoned.
In this story of love and loss, newlyweds Jennifer and Omar search for answers as they face unexpected obstacles with great heart. Often confined by her illness to the private space of her bed, Jennifer connects with others around the globe. Like a modern-day Odysseus, she travels by Skype into a forgotten community, crafting intimate portraits of four other families suffering similarly. Jennifer Brea’s wonderfully honest and humane portrayal asks us to rethink the stigma around an illness that affects millions. Unrest is a vulnerable and eloquent personal documentary that is sure to hit closer to home than many could imagine.”
Website: https://www.unrest.film/
Behind the Visible (2021, Feature about POTS): “Behind the Visible sheds light on a little-known invisible illness called postural orthostatic tachycardia syndrome, by providing an intimate look into the lives of those who live with the disorder. Much of the POTS community has been dismissed or doubted at some point in their journey. Those in the film get vulnerable and share their raw and very real experiences to help the world better understand what people with this debilitating illness go through. This film also highlights renowned specialists in the field to provide further validity to the condition. While this is an important watch for those in the POTS community, the film also resonates with the wider chronic, invisible illness and disability community through its compelling storytelling and broader themes. Many have called it a tear-jerker, so you might want to have some tissues on hand.”
Watch Behind the Visible on Vimeo: https://vimeo.com/ondemand/behindthevisiblefilm
The Reason I Jump (2020, Feature about autism): ”Based on the bestselling book by Naoki Higashida, THE REASON I JUMP is an immersive cinematic exploration of neurodiversity through the experiences of nonspeaking autistic people from around the world. The film blends Higashida’s revelatory descriptions of his autism, written when he was just 13, with intimate portraits of five remarkable young people. It opens a window into an intense and overwhelming, but often joyful, sensory universe, a rich tapestry that leads us to Naoki’s core message: not being able to speak does not mean there is nothing to say.”
Website: https://thereasonijumpfilm.com/
Introducing, Selma Blair (2021, Series about MS): “Actress Selma Blair gives an intimate, raw look at her life as she adapts to living with multiple sclerosis. After revealing her diagnosis on social media, Selma becomes a platform for disability and takes risks to slow the disease’s progression.”
Watch on Amazon: https://www.amazon.com/Introducing-Selma-Blair-Season-1/dp/B09CV8JRV2
Becoming Incurable (2021, Feature about different chronic illnesses): “Becoming Incurable is a documentary feature film that explores the transformation of three individuals who became diagnosed with chronic, incurable illnesses. The film’s mission is to empower, educate, and surprise viewers through three affecting narratives shaped by their chronic illness journey.”
Watch the full-length film on YouTube:
Unfixed (2020, Series on different chronic illnesses): “The Unfixed docu-series began with 20 incredible people who were willing to share their stories with us. They are all in various stages of living with chronic conditions and disability. Beginning February 2020, they began creating self-recorded videos once a month to reflect on specific topics that address what it’s like living with chronic illness. We then curated these reflections into short episodes. Their honest, unpolished moments are at the heart of the unfixed state – the highs, the lows and everything in between. As the community grows to include cast members from other Unfixed programming, new episodes are created – drawing from the diverse pool of diagnoses, backgrounds and stories. The Unfixed docu-series received IDA’s 2020 Media Impact Award.
The docu-series can also be watched on The Disorder Channel (accessible with Roku and Amazon Fire) and the Unfixed Community YouTube Channel.”
Website: https://unfixedmedia.com/new-page-2
Trust Me, I’m Sick (2020, Series on different chronic illnesses): “‘Trust Me, I’m Sick’ is a short documentary series directed by Sarah Stewart, which portrays different aspects of living with a chronic illness by following five Los Angeles residents throughout their daily lives. The film’s director teamed up with the non-profit organization ‘Suffering the Silence’ and represented people from the HIV, lupus, diabetes, Ehlers-Danlos syndrome (EDS), and kidney disease communities; therefore, showing a wide variety of health challenges.” – AbilityMagazine
You can watch the full series here: https://www.facebook.com/trustmeimsickseries/
Gaga: Five Foot Two (2017, Feature Documentary on Fibromyalgia): “Follow pop provocateur Lady Gaga as she releases a new album, preps for her Super Bowl halftime show, and confronts physical and emotional struggles.” You can watch it on Netflix.
Under Our Skin (2008, Feature Documentary on Lyme disease): “A gripping tale of microbes, medicine & money, UNDER OUR SKIN exposes the hidden story of Lyme disease, one of the most serious and controversial epidemics of our time. Each year, thousands go undiagnosed or misdiagnosed, often told that their symptoms are all in their head. Following the stories of patients and physicians fighting for their lives and livelihoods, the film brings into focus a haunting picture of the health care system and a medical establishment all too willing to put profits ahead of patients.” Website: http://www.underourskin.com
Let us know in the comment if you’ve watched those films and if you know of other great films on EDS or comorbid conditions.
Karina Sturm
September 2024
