Aufklärung_EDS
Ehlers-Danlos-Syndrom
Karina Sturm
Journalistin / Filmemacherin / Bloggerin / Aktivistin
Seit über 20 Jahren gehört das Schreiben fest zu ihrem Leben.
Was als Tagebuch- und Geschichtenschreiben begann, entwickelte sich zu zweisprachigen Blog- und Buchbeiträgen, bis hin zu einem kleinen Onlinemagazin.
Durch ihr eigenes Schicksal und ihre Wissenschaftshintergrund bewegt sie sich hauptsächlich im medizinischen Bereich, schreibt jedoch ebenfalls Reportagen, Feature und Essays,
über besondere Menschen, mit interessanten Lebensgeschichten.
Karina Sturm lebt zwischen zwei Kontinenten, mit mehreren seltenen chronischen Erkrankungen und wurde von einer wissenschaftlichen Mitarbeiterin zur Patientin.
Da sie durch ihre schwere Erkrankung ihre Arbeit in der Forschung aufgeben musste, aber dennoch ihre Affinität zur Medizin nutzen wollte,
fing sie an ihr Fachwissen mit eigenen Erfahrungen zu kombinieren und Artikel über ihre Erkrankungen, ihren Weg zur Diagnose und letztlich auch die Schicksale anderer Patienten zu schreiben.
Was als Tagebuch- und Geschichtenschreiben begann, entwickelte sich zu zweisprachigen Blog- und Buchbeiträgen, bis hin zu einem kleinen Onlinemagazin.
Durch ihr eigenes Schicksal und ihre Wissenschaftshintergrund bewegt sie sich hauptsächlich im medizinischen Bereich, schreibt jedoch ebenfalls Reportagen, Feature und Essays,
über besondere Menschen, mit interessanten Lebensgeschichten.
Karina Sturm lebt zwischen zwei Kontinenten, mit mehreren seltenen chronischen Erkrankungen und wurde von einer wissenschaftlichen Mitarbeiterin zur Patientin.
Da sie durch ihre schwere Erkrankung ihre Arbeit in der Forschung aufgeben musste, aber dennoch ihre Affinität zur Medizin nutzen wollte,
fing sie an ihr Fachwissen mit eigenen Erfahrungen zu kombinieren und Artikel über ihre Erkrankungen, ihren Weg zur Diagnose und letztlich auch die Schicksale anderer Patienten zu schreiben.
We Are Visible
Why I made a film about people with an invisible disease.
Strategie und Planung
But you don't look sick at all! "
"You are way too young to be sick!"
"You just act out everything!"
Since I became seriously ill in 2010, like countless other people, I have been hearing such comments all the time. Why? Because my chronic illness is not visible. For many of our fellow human beings, disability is an abstract concept. In the minds of some people, a wheelchair user should not be able to walk, and the seriously ill must look like death. In general, chronically ill people should actually look sick, right?
That's nonsense. A disability, like much else in life, is a spectrum and countless people live with disabilities that are severely restrictive but completely invisible. With my journalistic work I have been trying for years to dispel the prejudices in order to dispel people with chronic illnesses and disabilities and to make it clear to our fellow human beings that they should not judge us based on our appearance.
When I started studying journalism in Scotland in 2018, it was immediately clear to me what would be my biggest project so far: a film about people with an invisible disease. Everything that I could never properly describe in articles should become much clearer for the audience in front of the camera. And so the idea behind 'We Are Visible' was born.
'We Are Visible' is part of my master's thesis on the topic: “How to improve reporting on disability”. (How to improve media coverage of people with disabilities). The portrayal of people with disabilities in the media is often stereotypical and downright wrong.
Our stories are distorted so that they evoke stronger emotions. If disabled people are permanently wrongly portrayed, this leads to even more prejudices and a completely wrong image. I wanted to change that. With my film I want to show our reality, with all its challenges, big and small - no more and no less.
'We Are Visible' shows people in six different countries living with Ehlers-Danlos Syndrome. However, these families are representative for people with a wide variety of invisible diseases. All individual stories fit together like a puzzle and thus show the entire spectrum of the disease. In addition, they are accompanied by expert opinions that provide the necessary background knowledge about EDS.
This documentary shows what it really means to live with an invisible disease. But much more, it conveys the strength with which the EDS community fights to be seen.
Our disease may be invisible, but we are not!
We are Visible!
"You are way too young to be sick!"
"You just act out everything!"
Since I became seriously ill in 2010, like countless other people, I have been hearing such comments all the time. Why? Because my chronic illness is not visible. For many of our fellow human beings, disability is an abstract concept. In the minds of some people, a wheelchair user should not be able to walk, and the seriously ill must look like death. In general, chronically ill people should actually look sick, right?
That's nonsense. A disability, like much else in life, is a spectrum and countless people live with disabilities that are severely restrictive but completely invisible. With my journalistic work I have been trying for years to dispel the prejudices in order to dispel people with chronic illnesses and disabilities and to make it clear to our fellow human beings that they should not judge us based on our appearance.
When I started studying journalism in Scotland in 2018, it was immediately clear to me what would be my biggest project so far: a film about people with an invisible disease. Everything that I could never properly describe in articles should become much clearer for the audience in front of the camera. And so the idea behind 'We Are Visible' was born.
'We Are Visible' is part of my master's thesis on the topic: “How to improve reporting on disability”. (How to improve media coverage of people with disabilities). The portrayal of people with disabilities in the media is often stereotypical and downright wrong.
Our stories are distorted so that they evoke stronger emotions. If disabled people are permanently wrongly portrayed, this leads to even more prejudices and a completely wrong image. I wanted to change that. With my film I want to show our reality, with all its challenges, big and small - no more and no less.
'We Are Visible' shows people in six different countries living with Ehlers-Danlos Syndrome. However, these families are representative for people with a wide variety of invisible diseases. All individual stories fit together like a puzzle and thus show the entire spectrum of the disease. In addition, they are accompanied by expert opinions that provide the necessary background knowledge about EDS.
This documentary shows what it really means to live with an invisible disease. But much more, it conveys the strength with which the EDS community fights to be seen.
Our disease may be invisible, but we are not!
We are Visible!
Krankheitsbeschreibung: Ehlers-Danlos-Syndrom
The Ehlers-Danlos syndrome is a genetic multi-system disease in which the structure of the connective tissue is disturbed ...
More at: https://www.holy-shit-i-am-sick.de/
Krankheitsbeschreibung: Instabile "HWS"
In the case of diseases such as cervical spine instability, especially in the cranio-cervical area, interdisciplinary cooperation is of great importance, especially with regard to diagnostics. Although the diagnosis can already be made with the help of radiological methods, there are several disciplines that support this or can further reveal the full extent of the disease ...
More at: https://www.holy-shit-i-am-sick.de/
Wir möchten uns ganz herzlich bei Karina Sturm für Ihre Arbeit in der Aufklärung der unsichtbaren und Seltenen Erkrankung, die sie als Betroffene in der Öffentlichkeit sichtbar macht im Sinne aller Patienten bedanken! Die Erkrankung mag unsichtbar sein, aber die Betroffenen sind es nicht!
