Posts

The picture shows a young woman with straight, shoulder-length pink hair and glasses, sitting on a bed. She is wearing a light blue hoodie and black pants. To her right, there is a dog lying on the bed. The room has a red wall behind the bed, and there is a framed picture of a cat above the bed. On the left side of the bed, there is a small round mirror on the wall and a bedside table with a lamp. The bedspread is pink and white with a floral pattern.
,

Filmmaker Andrew Abrahams on the New EDS Documentary ‘Complicated’

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…
Book Cover Disjointed which shows a break between two lava stones with lave in the middle
,

Books on Ehlers-Danlos Syndrome

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…
A collage of several images in varying colors of social media icons and the face of a person
, ,

EDS Advocates to Follow on Social Media

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.…
, ,

A New EDS Clinic Coming to a Town Near You (Via Telehealth)

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…
A bright background with a serious looking girl in the foreground. She has long blonde hair and brown eyes. Title: Take care of Maya
, ,

New Netflix Documentary ‘Take Care of Maya’ Highlighting Wrongful Child Abuse Allegations

[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…
Caitlin, a woman with long red hair is sitting on a chair in her backyard. The sun is shining. She wears a blue shirt and sits in front of a gigantic orange tree with lots of oranges and green leaves.
, , , , ,

We Are Visible (Too), Episode 2: Caitlin O’Donnell

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…
Dr. Lilian Holm on EDS & Physical Therapy. Dr. Lilian Holm, a woman with shoulder-long brown hair and bangs, is sitting in her office, which is a large room with a turquoise wall behind her and an open fireplace. She sits on a beige chair and wears a black shirt and a delicate golden necklace. In the background is a treatment bench in the foreground two red flowers.
, , , , , , , ,

EDSed Episode 2: Dr. Lilian Holm on Physical Therapy & EDS

EDSed is our new series of full-length interviews with international EDS experts. These educational interview series with journalistic (news) quality is complementary to our webinar recordings and another free resource we provide for our…
Two people are sitting in beige office chairs in front of a white wall. Dr. Gensemer is a woman with long, wavy blonde hair. She wears a blue shirt and white pants and has flower tattoos on her arm. Next to her sits Dr. Norris, a man with short brown hair, grey glasses, a blue shirt and a dark blue jacket on top.
, ,

EDSed Episode 1: The Norris Lab

EDSed is our new series of full-length interviews with international EDS experts.  These educational interview series with journalistic (news) quality is complementary to our webinar recordings and another free resource we provide for…
A comic-like illustration of a Zebra with a golden microphone in front and text: EDS & Aging, New Project

EDS & Aging

The EDS & Aging Project Funny Bone Newsletter - March 2022 presented by EDS Awareness This is a community-centered project with people older than 45 who want to share their experiences about aging as a person with EDS.…
A screenshot of a zoom call with Ian Harding (left), a man with short brown hair and a full beard, and Karina Sturm (right), a woman with shaved brown hair and large, leaf-shaped earrings.
, , ,

In conversation with Ian Harding: actor, author, activist

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…
Black and white photo of Jade, a young girl with shoulder-long, blonde hair and a tube up her nose. She faces towards her left hand in which she holds part of her IV
, , ,

Watch ‘We Are Visible’ online ON DEMAND

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’…
Lucas and Lotte, two young children, are in their classroom playing on a table. Lucas has blonde hair and wears a red "car" shirt, and Lotte has blonde, long hair bound to a ponytail and wears a white shirt.Karina Sturm
,

Press about ’We Are Visible’

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…