Archive for category: We Are Visible

We Are Visible is the debut feature film by filmmaker Karina Sturm, who lives with Ehlers-Danlos syndrome besides other conditions herself. We Are Visible was produced as a student project and features people with EDS and comorbid conditions around the globe. Chronic Pain Partners Production supported We Are Visible during the screening and distribution process, and the film is available on Chronic Pain Partners Productions’ Vimeo channel for a small amount donated to Chronic Pain Partners. 

You can watch the film here: 

https://vimeo.com/ondemand/wearevisible

SYNOPSIS:

“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!

SUMMARY:

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 people with EDS face, and the differences in accessibility of care depending on the area they live in. The documentary focuses on the one thing that unites all people with EDS: Their never-ending endurance to overcome those obstacles and to thrive. It conveys the hope and strength with which they fight for a better quality of life and care.

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 people with EDS worldwide came closer together as a community. They are stepping up to raise awareness and knowledge about their condition, and We Are Visible is dedicated to explicitly supporting all of them.

EDS is an invisible illness, just like many other chronic conditions. And this comes along with another common misconception. How can you be sick if you look perfectly fine? This film will show people of all ages (5 – 60 years old) and backgrounds in various parts of the world who are all differently affected by this invisible condition. By showing all of those sides, We Are Visible tries to resolve prejudices other people might have against Ehlers-Danlos syndrome.

People with EDS 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. We Are Visible will show that EDSers are some of the strongest-willed people despite their challenges. While all of them share the rare illness, they are not defined by a chronic health condition. My film embraces these differences and shows how everyone copes in a different way.

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

Every one of the 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!

FILMMAKER:

Karina is a multi-media journalist and filmmaker from Germany who has lived in San Francisco, CA, for seven years. She gained significant scientific knowledge through studying laboratory technology and working in research. Due to a chronic illness and invisible disability, she found her passion for media production and has been working as a freelance journalist since 2013. In 2019, she finished her Master’s degree by producing a feature-length documentary called We Are Visible to highlight how to improve reporting on people with disabilities in media. We Are Visible has won several movie awards, while Karina graduated with distinction from her journalism program. Karina’s main focus is to represent people with illnesses and disabilities accurately in the media to reduce biases and stereotypes. She thinks disabled journalists should be reporting on disability. Besides journalism, Karina has a strong passion for all activities that involve being on or in the ocean. She loves traveling, dogs, facts, and Heavy Metal music, and hates lies, intolerance, and cooking. Karina’s film We Are Visible is a non-profit project and part of her MA thesis.

Karina is also the editor-in-chief of our Chronic Pain Partners Post, a monthly newsletter featuring stories by and for the EDS community.

More information about Karina: www.karina-sturm.com

Film trailers:

Trailer 1: 

https://vimeo.com/349770539

Trailer 2: 

https://vimeo.com/349770866

Trailer 3: 

https://vimeo.com/348046371

REVIEWS:

IMDb

This debut film from Karina Sturm is a paragon of storytelling and journalistic fervour. In this soul-stirring insight into EDS, Karina holds our hand and takes us around the world. There is a multitude of touching, enlightening and educational human stories carefully weaved together to create what is pièce de résistance of documentary making. But whilst the film has a number of fascinating subjects, it is Karina who stands out from behind the camera. Her style is strong and caring, morally muscular and emotionally aware. It brings me joy to see there are people like Karina in journalism – she is the future I want to live in.

https://www.imdb.com/title/tt11100592

DAVID-ELIJAH NAHMOD – JOURNALIST AND FILM CRITIC

It’s a profoundly moving and eye-opening film that will hopefully find an audience outside of the Ehlers-Danlos community. It’s a film that calls for compassion and understanding, and explains in no uncertain terms exactly what Ehlers-Danlos can do to a person’s body.

Read the full review here: https://belocipriani.com/disability-advocates/life-with-ehlers-danlos-syndrome-chronicled-in-new-documentary/

PATIENT WORTHY

Karina’s love and respect for these people and their stories shine through every frame, letting the viewer in on a world that may have been unfamiliar to us.

Read the full review: https://patientworthy.com/2020/02/05/we-are-visible-how-karina-turned-advocacy-into-art/

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)