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. My documentary 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.
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.”Dr. Grahame, EDS expert
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 We Are Visible is dedicated to explicitly support 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), 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 sides 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. We Are Visible will show that EDS patients are some of the strongest-willed people despite 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. 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 other healthcare systems which lead 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!
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Picture by Frank Marx