In my blog, I’ll share with you my experiences as a chronically ill and invisibly disabled advocate and journalist.

A golden book cover: Fourth Wing

How Rebecca Yarros’ “Fourth Wing” Embodies Ehlers-Danlos Syndrome 

What if the hero of a bestselling novel shared your struggles—and your strength? Rebecca Yarros’ Fourth Wing, the first book of a fantasy series, follows Violet Sorrengail, a young woman forced to join a brutal dragon rider academy and…
Logo Props No More, which is a purple microphone and text: Disabled Creators Tearing Down Media Barriere
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Props No More: Redefining the Scene: Beyond Representation to Authenticity

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…
A close-up of a woman wearing headphones and speaking into a microphone. She has light brown, shoulder-length hair with blonde highlights. She looks forward with focus as she speaks into a black, professional studio microphone attached to a flexible arm. The background is blurred and neutral.
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Proud Stutter

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…
a hand with purple gloves in a lab with a pipette
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Norris Lab Finds HEDS Gene: Kallikrein

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…
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.
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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…
The picture shows a person smiling at the camera, wearing a tie-dye shirt with yellow, pink, and blue colors. They have short hair, glasses, and a black neck brace with white trim. On their face, there is a small flower-shaped patch on their right cheek. They are holding up a feeding tube. Behind them is a background of various stuffed animals.
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Complicated – the must-watch documentary on Ehlers-Danlos Syndrome

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…
A collection of surgical tools
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Outcomes of Craniocervical Instability Fusion Surgery in People with EDS

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…
Book Cover Disjointed which shows a break between two lava stones with lave in the middle
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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
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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.…
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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
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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…
A female doctor with a blue surgical robe and a blue cap holding up a purple stethoscope.
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Mastering Appointments Successfully With EDS

Content: Becoming a Professional Patient: Why is it Necessary? Medical Gaslighting Challenges for Medical Professionals and Consequences in Patient Care  Becoming the Professional Patient Before the Appointment During the…