Saturday, February 22nd, 2020 2pm to 5pm
Movie to start promptly at 2:20pm
North Providence Public Library
1810 Mineral Spring Ave, North Providence Rhode Island 02904
Exclusive Q & A with Director, Producer,
Editor Karina Ulrike Sturm to follow!
NO PHOTOGRAPHY OR VIDEO OF THE MOVIE IS ALLOWED! This is a copyrighted film we have special permission from the creator to show, it is not to be shared without her express permission. To find out more about it go to https://we-are-visible-film.com/ (Scroll down for more information about the film)
We will have a snack table, everyone is welcome to bring a snack for themselves or to share, please be mindful of allergens.
Please do not wear or spray fragrance in the room. We have people attending with severe allergies who will have to leave if you spray, please be considerate of others.
Photo Booth Fun! We will have our photo booth set up again, this time the backdrop will be Hollywood Red Carpet, dress to impress or come in you most conformable pajamas!
The room will be open at 1:40 for those wanting to come early and get the best seats. If you have visual or auditory issues and need to reserve a seat in the front please Email Krista@rieds.org
1:40 – Room Open/Snack Table set up/ Photo Booth
2pm-2:20pm – Come in and get settled
2:20: Movie Start Time
3:28- Movie Ends – 10 minute break
3:40- Q&A with Karina Strum
4:30 – Pack up/Clean up
We are inviting the Ehlers-Danlos community to an exclusive screening of the feature-length film ’We Are Visible,’ which shows a variety of people living with an invisible condition called Ehlers-Danlos syndrome all around the globe followed by a Q & A with the filmmaker.
We Are Visible:
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.”
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 that 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!
About the Filmmaker
Karina grew up in Germany but currently lives in San Francisco, CA. After finishing school, she has worked in the medical field for eight years – most recently as a laboratory technician in a German research facility with a focus on biotechnology. In 2010, she developed symptoms related to Ehlers-Danlos syndrome and comorbid conditions and was unable to continue her research. She soon found her passion for writing and started to combine her medical knowledge with her personal experiences with disability and chronic illness. Her work focuses on medicine, science, chronic illness, and disability. 2018, Karina was accepted into a journalism program in Edinburgh, Scotland, and has been studying ever since. As part of her degree, she has worked with blind journalist Belo Cipriani and produced three accessible short films called ”Firsts” that feature writers with different disabilities. Additionally, she writes for an Austrian magazine for medical professionals with a focus on the patient’s perspective, and she has also written for international publications such as the Columbia Journalism Review. 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.
More information about Karina: