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But we are proud to say that karinabutterfly contributed 95 entries already.
Ehlers-Dan… What? Most people – and sometimes even medical professionals – do not know how to spell Ehlers-Danlos syndrome at all, let alone that they would know anything about the various symptoms that are associated with the rare illness. I feel like this can only be changed by actively and publicly talking about EDS as […]
I recently had the pleasure of interviewing actress and advocate Jameela Jamil for ABILITY Magazine. Jameela Jamil is an advocate for social justice, body neutrality, LGBTQ rights, and for a while now, she has also been using her public platforms to speak out about her life with Ehlers-Danlos syndrome and many comorbid conditions. In our interview, […]
In my role as journalist for ABILITY Magazine and as advocate for the Ehlers-Danlos community, the German organization Chronisch Cool contacted me and connected me to Ian Harding, better known as Ezra Fitz in Pretty Little Liars. Ian is a popular actor, teen choice award winner, author, and passionate advocate for the lupus community. I […]
My documentary film ‘We Are Visible,’ featuring people living with Ehlers-Danlos syndrome all across the globe, is now available ON DEMAND. Unfortunately, due to COVID-19, most events and film screenings for ‘We Are Visible’ had to be canceled, and nothing really went as planned. But the safety of our community comes first! Therefore, we decided […]
A few weeks ago, I met Jacob Fraker, a legislative aid of Assemblymember Susan Eggman at the California State Capitol. More importantly, Jacob is part of the rare disease community as well. He has been living with the rare genetic condition cystic fibrosis his whole life. His work focusses on health policy, specifically rare disease […]
I have the great honor to be working with Ability Magazine, one of my favorite publications by and for people with disabilities. Some of my work: Director Sarah Stewart and her all-female crew gave great insight into many of the challenges people with chronic illnesses have to face all the time, and by including such […]
One benefit of being a disabled journalist and filmmaker is the passion every member of the community we serve shows for our cause: the accurate representation of disability in media. And as part of this community, I often have the privilege to connect to other journalists or filmmakers with disabilities. This time, while working on […]
I had the great honor to present my film followed by a short Q&A at Chapman University in Orange, CA. Organized by social studies Professor Art Blaser and disability studies expert Prof. Beth Haller, the screening was held in front of around 100 attendees, most part of the Ehlers-Danlos community or other invisible condition communities. […]
Interviews and Podcasts: EDS Awareness Podcast with Dr. Linda Bluestein I had the honor to be interviewed by Dr. Linda Bluestein, an EDS expert for a podcast featured by EDS Awareness. In this interview, we discuss the challenges of making ’We Are Visible’, my personal goals for the next years, and the plan for future […]
‘We Are Visible,’ my first feature-length film about people living with Ehlers-Danlos syndrome all across the globe was accepted into smaller film competitions and awards. Look how well my documentary did. Los Angeles Film Awards September 2019 We Are Visible made it into the official selection of the LA Film Awards and was then chosen […]
Writers, Journalists & Disability Advocates 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 […]
What can I expect of ’We Are Visible’? ’We Are Visible’ is a student film and part of my journalism degree’s MA thesis. I am also disabled and live with Ehlers-Danlos syndrome and related conditions myself. As part of my program, I have produced one short film about a nursing home caring for people with […]
