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Props No More is an intersectional documentary produced by GADIM (The Global Alliance for Disability in Media) and highlights disabled creatives and their efforts to change the stereotypical narrative around disability. The feature-length documentary begins by examining how disabled people have been marginalized, stereotyped, or entirely omitted from the mainstream media, which shape our understanding […]
Summary: Proud Stutter is a short film featuring Maya, who grew up with a stutter she believed she needed to overcome, embarking on a transformative journey of self-acceptance. Realizing that stuttering is simply another way of speaking, she creates a podcast to amplify the voices of those who share her experience. Through candid conversations, Maya […]
Chronic Pain Partners is excited to share a significant breakthrough from the Norris Lab regarding hypermobile Ehlers-Danlos Syndrome (hEDS). After a long wait, the research, spearheaded by Dr. Cortney Gensemer, identifying a genetic variant associated with hEDS has been published, pinpointing mutations in the Kallikrein gene family. The Kallikrein gene family, known for encoding enzymes […]
Chronic Pain Partners’ Karina Sturm was honored to speak with Andrew Abrahams, who has been directing the new Ehlers-Danlos documentary Complicated. Abrahams is an award-winning, two-time Academy Award-shortlisted producer/director of creative non-fiction films and the president of Open Eye Pictures. He is also a cinematographer and photographer. His documentary Under Our Skin, which highlights the chronic Lyme […]
A new documentary on Ehlers-Danlos Syndrome, Complicated, will soon be released. Chronic Pain Partners was honored to preview the film, which dives deep into many of our community’s challenges. Directed by award-winning and Oscar-shortlisted filmmaker Andrew Abrahams and co-produced by TCAPP board member and advocate Donna Sullivan, this film is the most comprehensive and accurate […]
A recent study by Henderson et al. found significant benefits for EDS patients with severe craniocervical instability who underwent occipito-cervical fusion surgery. Craniocervical instability is one of the most severe neurological complications of the Ehlers-Danlos syndromes, causing many affected individuals symptoms such as headaches, severe full body pain, dizziness, nausea, blurred vision, paresthesia, fatigue, weakness, […]
With growing awareness about the Ehlers-Danlos syndromes, varying resources in different types of media developed over the last years. Our Chronic Pain Partners’ Team is collecting their favorite books, podcasts and films on EDS and its comorbid condition in a series of listicles you will find on our website over the next months. We are […]
The Ehlers-Danlos Syndromes may be considered a group of (mostly) rare connective tissue disorders; however, our community is more diverse and stronger than ever, with many advocates sharing their experiences and knowledge via social media. Chronic Pain Partners put together a list of EDS advocates meant to be a work in progress and, of course, […]
Chronic Pain Partners is excited to speak with David Jameson Harris, a former McKinsey consultant, about his latest project, a new Ehlers-Danlos syndrome clinic, hopefully offering access to expert EDS care in several states starting in February 2024. CPP’s Karina Sturm spoke with David Jameson Harris about his new EDS clinic, his goals, and how patients […]
[CW: Suicide] Netflix has just released the highly anticipated documentary, “Take Care of Maya,” which unveils the heart-wrenching journey of the Kowalski family as they confront and challenge wrongful child abuse allegations. Directed by Henry Roosevelt, also known for his role in “The Social Network,” the documentary delves deep into the lives of the Kowalskis, […]
Content: Becoming a Professional Patient: Why is it Necessary? When living with a rare condition like Ehlers-Danlos syndrome (EDS), it is essential to become an active participant in managing your health as a patient because most doctors have little knowledge about EDS. At the same time, the healthcare system is not designed to treat complex […]
We Are Visible (Too) is an ongoing mini-film series portraying people with EDS all across the globe. In this mini-documentary series, we will continue on the We Are Visible – a feature-length film about people with EDS – journey and add a variety of 5 – 10 minute videos of other people across the country […]
