Posts

Mid-size shot of a woman with short, brown hair and a pink flower in her hair. She is wearing retro-style glasses and a neck brace and talks to a man which we can see from behind.
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Behind the Scenes: Meet the Filmmaker

We Are Visible is a documentary film about people all around the world living with Ehlers-Danlos syndrome (EDS).  Furthermore, it also involves a filmmaker that has EDS herself and therefore knows exactly what living with this invisible…
Frontalaufnahme einer Frau mit braunen Haaren, die auf beiden Seiten zu einem Zopf gebunden sind. Sie trägt einen warmen Wintersweater.
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We Are Visible – Meet Jojo

We Are Visible is a feature-length documentary film about people all around the world living with Ehlers-Danlos syndrome. Today, I invite you to get a look at one of the incredible humans in this film: Jojo. Jojo is a mom of five children.…
Side view of a woman with short, brown hair holding a camera with a big microphone in front of her face and filming out to the ocean.Frank Marx
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Coming soon: Documentary film about the Ehlers-Danlos syndromes

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…
Two pictures. On the left is Denise B., a woman wearing a blue shirt, wrist and knee braces. She has short red hair and sits in front of a tree in the forrest. On the right is Rana T., a woman with long brown hair, who has sunglasses on her head, sitting in a park
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Misdiagnoses – an investigative article

Have you ever wondered if you are the only one who has been misdiagnosed by a medical professional in the past? In fact, you are in good company. Diagnostic errors are a global threat, but rarely do we hear about them. For this article, I interviewed…
Sam E. Rubin ist ein junger Mann der vor einem Gemälde sitzt, die eine Katze zeigt. Er blickt nach unten und hat grüne Augen mit langen Wimpern. Sein Haar ist braun und wellig, sein Hemd kartiert.
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Firsts – Episode 3: Sam E. Rubin

Firsts is a mini documentary series about several authors contributing to the book "Firsts - Coming of Age Stories by People with Disabilities" by Belo Cipriani. Please enjoy Episode 3: Sam E. Rubin Version with closed captions:  https://www.youtube.com/watch?v=KYt3ehUk-54 Version…
Caitlin Hernandez, a young woman with brown, straight, shoulder-long hair and brown eyes smiles
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Firsts – Episode 2: Caitlin Hernandez

Firsts is a mini documentary series about several authors contributing to the book "Firsts - Coming of Age Stories by People with Disabilities" by Belo Cipriani. Please enjoy Episode 2: Caitlin Hernandez Version with closed captions:  https://www.youtube.com/watch?v=VffHRQjCkck Version…
David-Elijah Nahmod, ein Mann mit Brille und kurzen, welligen, braunen Haaren sitzt in einem Bürostuhl und trägt ein blaues Hemd.
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Firsts – Episode 1: David-Elijah Nahmod

Firsts is a mini documentary series about several authors contributing to the book "Firsts - Coming of Age Stories by People with Disabilities" by Belo Cipriani. Please enjoy Episode One: David-Elijah Nahmod Version with closed captions:  https://www.youtube.com/watch?v=oEuDbmmLQN0 Version…
Belo Cipriani, a young man with black, short hair wears a blue shirt and black jeans and sits on stone steps in front of a sea of pink flowers. One hand lies on the back of his guide dog, a black labrador.
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Firsts – The Mini Documentary Series for Belo Cipriani

I had the honor to work with Belo Cipriani, a blind journalist, and advocate for people living with disabilities. Belo recently established a publishing house called Oleb Books whose mission is to represent disability in a respectful and honest…
Butterfly which is a lateral cut through the spinal cord as well. It is striped like a zebra.

German Podcast

In my German podcast Aches, Pains & Smiles, I talk to people with various disabilities and chronic illnesses about everything that matters to us.
Denise sits in her wheelchair on a beach. She is waring ankle, knee and wrist braces. Also she wears white pants, a blue shirt and red lipstick. Her hair are red and short. In the background is the ocean and some green grass.
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30 doctors have been wrong for 12 years: The medical odyssey of Denise B.

Denise lived with excruciating pain. Her skin was covered in hematomas and no doctor could help her. It was twelve years later, when the surprising diagnosis was revealed, and it came close to salvation. Early in Denise’s life doctors…