Meghan O’Rourke and The Invisible Kingdom

A woman with long brown hair sits on a chair in a living room. She wears blue jeans and a brown sweater. Behind her is a large window.
Living with complex chronic health conditions is like living in The Invisible Kingdom, according to Meghan O’Rourke’s new bestseller with the same title. O‘Rourke is a journalist, poet, author and the recipient of numerous awards, including a Guggenheim Fellowship, a Radcliffe Fellowship, a Whiting Nonfiction Award, and the May Sarton Poetry Prize, among others. ... Read more

Together, we aren’t rare! Let’s talk about Ehlers-Danlos syndrome

A shirt print: Ehlers-Danlos Syndrome - EDS Awareness
Twenty-five million people in the US are affected by rare diseases – many of them are genetic and life-limiting. One of these conditions is Ehlers-Danlos syndrome (EDS), an unknown and neglected disorder of the connective tissue that can lead to severe disability. Over the last years, popular figures like Jameela Jamil and Mandy Harvey ... Read more

Coping in Isolation: Sarah – COVID Video Series

A woman with chin-length, black hair is looking out of a window.
SARAH, 43, Oakland, California Sarah is a librarian by day and a patient advocate by night. She is 43 years old and works as the director of the digital library in Oakland. She has been diagnosed with Ehlers-Danlos syndrome fifteen years ago, and additionally lives with many other conditions, including an immunocompromising mold toxicity ... Read more

Coping in Isolation: Emily – COVID Video Series

Emily, a woman with long, brown hair sits on a couch smiling. In her arm is a fluffy, white puppy.
Emily, 31, California   Emily is a 31-year-old occupational therapist who focuses on helping other people with disabilities gaining independence living skills. Emily herself is living with a rare condition called Ehlers-Danlos syndrome that has  a major effect on her life. Because of EDS, Emily has had strokes, spinal cord injuries and developed adrenal ... Read more

Coping in Isolation: Nancy – COVID Video Series

Nancy, a woman with chin-length brown hair stands on a hill. She smiles and uses green crutches.
NANCY,62, San Jose, California   Nancy is 62 years old and works as a physical therapist with people living with rare diseases. She also has two herself. Nancy lives with complex regional pain syndrome (CRPS2) from a nerve injury to her foot and ankle, as well as with a genetic condition called BRCA2, a ... Read more

Jameela Jamil: Advocate First, Actress Second

Jameela Jamil
Jameela Jamil, known in the UK as a TV and radio presenter, gained popularity in the US for her role as Tahani Al-Jamil in NBC’s The Good Place. In disability circles, she is recognized as an advocate for disability rights, LGBTQ rights, body neutrality, and her work around social justice. Jamil lives with several chronic ... Read more

Introduction: Coping in isolation – People with disabilities belonging to the COVID high-risk group speak out

A black and white close-up shot of Karina, a woman with shaved hair and huge round earrings
COVID-19 has changed everyday life for most people around the world in just a few weeks. Some countries, for example, Italy, were hit harder than others, but almost all of them realized how serious this pandemic has become. Most cases of infections seem to be mild or even asymptomatic. However, for those of us ... Read more

Trust Me, I’m Sick – Documentary

A documentary series on chronic illness by the community and for the community ‘Trust Me, I’m Sick’ is a short documentary series directed by Sarah Stewart, which portrays different aspects of living with a chronic illness by following five Los Angeles residents throughout their daily lives. The film’s director teamed up with the non-profit ... Read more