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What people say about ‘We Are Visible’

Writers, Journalists & Disability Advocates

Caitlin is sitting with her face resting on her hand with both a rainbow beanie on and rainbow painted nails. She is smiling and looking down.
Caitlin Hernandez

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

A man with a black cap and glasses sits on stairs
David-Elijah Nahmod

 A powerful and moving film that shines a light on EDS, a little known disability. We Are Visible offers much food for thought–it has the power to teach the non-disabled to look upon disabilities of all kinds with compassion and understanding. The people who open themselves up for Sturm’s camera do not ask for pity, they simply want to be heard, to be accepted. Their courage and their honesty serves as an education for us all.

David-Elijah Nahmod – Disabled Journalist & Film Critic

Your documentary is powerful! You teach the world about your experiences, and the experiences of countless people around the world living with invisible disabilities. I hope many doctors and healthcare professionals watch this so they can be more informed.

Haben Girma – Deaf-blind disability rights lawyer, author, speaker

Image of a man with blackish/grey short hair and a white sweater.
Jon Rodis

‘We Are Visible’ shines a bright but caring light on two very poorly understood and treated conditions, Ehlers-Danlos Syndrome and the many challenges of having and living with an ‘Invisible Disability’. 

Jon Rodis – National Disability and Medical Advocate for Rare Disorders

Belo Cipriani: A man with short, brown hair wearing a blue shirt is sitting on stairs with pink flowers in the background. He looks into the distance and is smiling.
Belo Cipriani

“An insightful documentary about a condition that not many people understand.”

Belo Miguel Cipriani – Editor, The Disability Tribune

EDS community

Film Release in Germany on September 21, 2019.

You found the words that I am always missing.

Participant of the annual Ehlers-Danlos conference in Germany by the Ehlers-Danlos Initiative
A person with short, brown, curly hair and round, black glasses smiles.

This student film moved me to tears! Kara so adeptly captured the huge range of issues and gross misunderstanding patients with Ehlers-Danlos experience. I wish the whole world could watch this. I’ve never seen a more underdiagnosed, misunderstood condition, ever. And as an EDS patient myself, I could literally feel the pain of the subjects as they shared their personal stories. Kara is a great budding story teller. I’m so glad she undertook this project

Jan – Community Leader – Oh TWIST!

You successfully made the different sides of our condition understandable.

Participant of the annual Ehlers-Danlos conference in Germany by the Ehlers-Danlos Initiative

We were all really touched and at first speechless.

Participant of the annual Ehlers-Danlos conference in Germany by the Ehlers-Danlos Initiative

No words. The film says it all.

Participant of the annual Ehlers-Danlos conference in Germany by the Ehlers-Danlos Initiative

After the film, we were speechless for minutes and so touched. I felt as if you made a film about my life! You found the words and images for all this invisible physical and emotional pain.

Group of people at the first film screening in Germany
A woman with short, black, chin-long hair and a black necklace is looking out the window.
Sarah H.

“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

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.

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: http://ohtwist.com/becoming-visible

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: https://jeanniedibon.com/wellness/this-film-is-going-to-close-the-gap-on-eds-education/

Find We Are Visible on IMDb here.

2 replies
  1. Jonathan says:

    Hearing from others that suffer the same as I do is both sad and a relief. It’s sad that another person is suffering from the same debilitating disease. It’s a relief because I know that I’m not alone and that I’m not crazy. Even if a doctor fully understands EDS, there is no way he/she could ever fully understand it without having suffered through it. Thank you for all your hard work and suffering you put into this movie!

    • karinabutterfly says:

      Hi Jonathan, thanks so much for your kind words! I truly appreciate your support. Sending you some gentle hugs.




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