Ehlers-Danlos syndrome

Cherylee Houston — Writers and Performers with Disabilities & EDS

Cherylee Houston is a British actress known for her roles as Izzy Armstrong in BBC’s Coronation Street and as Maz, a character in Houston’s BBC Radio 4 comedy series Tinsel Girl. Both characters show the power of authentically cast disabled in the entertainment industry and bring awareness to their audiences, especially young actors with disabilities. … Read more

Meghan O’Rourke and The Invisible Kingdom

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. On … Read more

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

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 publicly … Read more

Jameela Jamil: Advocate First, Actress Second

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

Mandy Harvey — Perfect Pitch

All Mandy Harvey ever wanted was to be a singer. But that dream was nearly eclipsed by Ehlers-Danlos syndrome (EDS), a connective tissue disorder that left her profoundly deaf, unable to hear a sound. At the time, Harvey, a Colorado State University freshman, was studying vocal music education, and training for the career she’d always … Read more

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

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 who … Read more

Pansy St Battie and the Beauty of Burlesque

Pansy St Battie was your average kid growing up in San Francisco. When she was a teenager, she was diagnosed with joint hypermobility syndrome or Ehler-Danlos syndrome. She has been using a wheelchair for the past five years. Pansy has also been bitten by the ‘show biz’ bug. She is a model and a burlesque … 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 organization … Read more