Jojo, a woman with a ponytail and a blue bandana wrapped around her head sits in front of a fireplace that is burning and talks on the phone. She looks concerned.

The Film

The Ehlers-Danlos syndromes are a group of rare connective tissue disorders that can affect every part of the body. We Are Visible wants to show the full picture of the condition including the complex presentation of symptoms, to the complications while searching for a diagnosis, over misdiagnoses and their harmful consequences, but also the daily challenges EDS patients face, and the differences in accessibility of care depending on the area they live at. We Are Visible focuses on the one thing that unites all patients: Their never-ending endurance to overcome those obstacles and to thrive. It conveys the hope and strength with which EDS patients fight for a better quality of life and care. Each part is represented by one EDS patient/family.

Dr. Rodney Grahame, who has worked with EDS patients for decades, once said: ”No other disease in the history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome.” However, this fact is also the reason why EDS patients worldwide came closer together as a community. They are stepping up to raise awareness and knowledge about their condition, and this documentary is dedicated to explicitly support all of them.

Just like many other chronic conditions, EDS is an invisible one, and this comes along with another common misconception: How can you be sick if you look perfectly fine? We Are Visible will show people of all ages (5 – 60 years old), with diverse backgrounds, different financial standing in different parts of the world that are all differently affected by this invisible condition. I hope that showing all those perspectives will resolve prejudices other people might have against Ehlers-Danlos syndrome.

EDS patients have to live with physical pain on a daily basis. However, sometimes being belittled or judged, or not believed in can be worse than the physical pain. This documentary will show that EDS patients are some of the strongest-willed people despite or maybe even because of their disabilities. While all EDS patients share the rare illness, they are still a variety of personalities and not defined by a chronic health condition. We Are Visible embraces these differences and shows how everyone copes in a different way. 

The contributors of this documentary live in different countries, and therefore, EDS additionally appears in the context of other healthcare systems, which leads to new challenges. All single stories fit together as a whole and will be accompanied by expert opinions which give necessary background knowledge about EDS. 

Every one of my contributors is fighting for something, for instance, for a better quality of life, for better treatment options, for their children, for awareness, or simply for survival. EDS patients are not victims; they are powerful individuals.

They are visible!

Awards

LA Film Awards: Honorable Mention “Student Film (Feature)

New York Film Awards: Winner “Best Student Film”

Festigious Film Awards: Honorable Mention “Student Film (Feature)

Oniros Film Awards: Honorable Mention “Best Main Theme”

Florence Film Awards: Honorable Mention “Feature Documentary”

Druk International Film Festival: Outstanding Achievement Award “Student Film” and “Disability Issues”

Tagore International Film Festival: Winner “Disability Issues”

Accolade Global Film Competition: Award of Merit “Original Score”; Award of Recognition “Disability Issues (Student),” “Health / Medicine / Science (Student),” “Documentary Feature (Student),”Women Filmmakers (Student),” “Contemporary Issues / Awareness Raising (Student)”

Semifinalist at Trailer Film Festival

Impact DOCS Awards: Awards of Merit in four categories (student): Documentary Feature, Disability Issues, Health / Medicine / Science, Original Score (Composed by Markus-Frederik Bohn)

Semifinalist October at European Cinematography Awards

Docs Without Borders Film Festival: Award of Exceptional Merit Health, Award of Excellence Research

Semifinalist Courage Film Festival

Specifics

Equipment & Crew: 

Panasonic GH5, two shot-gun microphones (Sennheiser MKE440), 4K smartphone. No crew.

Music and Sound:

All music was composed by Markus-Frederik Bohn. It’s mostly piano, flute, and ukulele.

Specials: 

An animation explains the concept of hypermobility.

Point of View: 

The whole film is narrated in diary-style and from my perspective as a filmmaker and as someone who has EDS herself. 

Duration: 

69 minutes

Funding/Budget: 

We Are Visible is entirely self-funded. Flights, train tickets, animations, translations, legal costs, promotion, and all other expenses were paid by the filmmaker and her family. This film is non-profit. Possible income will be donated to an Ehlers-Danlos organization of the filmmakers choosing. Budget: estimated 6000 Euro. 

Filming Locations: 

Germany, Malta, San Francisco, US; Maryland/Washington, US; UK, Netherlands, Belgium.

Target Audience:

Primarily, this film was produced to raise awareness for Ehlers-Danlos syndrome. This means it targets families, friends, and health care professionals that care for people with chronic and rare illnesses. However, it is also for a general audience interested in learning more about invisible illnesses. And at the same time, it can be used as an educational film for medical professionals and future doctors. 

Distribution: 

We Are Visible was released in October 2019 to be previewed by the EDS community before applying for film festivals in 2020. In parallel, community events for life screenings will be set up. After the screening events and the festival season, We Are Visible is planned to be released on video-on-demand platforms for a small fee benefitting an EDS organization. 

Conflict of Interest: 

Since the filmmaker lives with EDS herself, she has a personal interest to share the stories of other people with Ehlers-Danlos syndrome, and she is passionate about raising awareness. However, Karina perpetually reflected on her motives, and worked closely with other journalists to reduce a possible bias.

Testimonials

This engaging, poignant film captures the triumphs, trials, and truths experienced by several different people living with the same condition.
Viewers will come to care about each character and deeply understand the ways in which illness, the public’s ignorance and prejudice, and both internal and external struggles impact those living with EDS.

Caitlin Hernandez, Blind Writer, Author, Descriptive Audio Talent

We are Visible” is a moving portrait of the journey of Ehlers-Danlos Syndrome survivors from symptoms to diagnosis to management. This international collage of patients and medical providers starkly highlights the similarities of experiences as well as the differences in health care options, support structures, and the stigma of the diagnosis.

Sarah H. – Librarian & Advocate

Not only was the story telling masterfully handled, weaving her own diagnostic journey into those of her six international subjects, but their stories were so moving and compelling I was sunk. Bring tissues!

Oh Twist! Read the full review here.

But not one of the six participants in the film felt sorry for themselves. Remarkable strength. The film demonstrated resilience, strength and determination – qualities I believe you need to survive in the EDS world. It shouldn’t be a fight, but for many people it is. We Are Visible is going to be a valuable tool to show the world what living with an invisible illness is really like. 

Jeannie Di Bon. Read the full review here.

I saw Karina Sturm’s Ehlers-Danlos documentary at Chapman University in Orange on Sunday. The room was full, and the film was something that should be seen by medical professionals, students, and the public. For me, the day was about more than the film. I managed to dress, and to leave my bed, and the nursing home, for something other than a doctor’s appointment. I was able to sit in a room of people who understood EDS or chronic illness, or who wanted to (I also bumped into this flier for a campus chronic-illness club while I was there, and at least one member attended the screening). I was able to be on a university campus again; I miss teaching. I was able to enjoy my surroundings; I’m uncomfortable in Orange County, but the city of Orange, around the campus, was darling, and I wished that I could spend an evening just sitting at a vegan restaurant there. And it was nice to meet and talk with Karina, and a couple of other people I want to know better. But I was struggling, just to be there: I was weak and nearing adrenal crisis because a nurse had forgotten to provide my hydrocortisone that morning, I couldn’t find a position in my broken wheelchair that wasn’t painful, my right shoulder wouldn’t stay in place, my left wrist was aching, the noise in the room was painful, part of the film was deeply triggering b/c of the experience that I’m still living, and every action was exhausting…But I was also desperately posting my GoFundMe fliers everywhere I could, to find help. I’m still recovering, but I’m so glad that I went.

RareDiseasePatient on Instagram.

Access

As a disabled journalist and filmmaker, Karina wanted to make this film available to as many people as possible. Therefore, she created a fully accessible English version with captions and a separate version with descriptive audio by the wonderful Caitlin Hernandez

A non-accessible English, as well as a non-accessible German version are available too. 

For We Are Visible’s deaf-blind viewers, Karina can provide a document with captions and descriptive audio. Please, contact her if you would like to watch the film!

We Are Visible on IMDb