Posts

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“It’s All in Your Head”: New Study Confirms What hEDS Patients Have Been Told for Decades

A landmark study has revealed what most people with hypermobile EDS (hEDS) already knew since disease onset: a staggering rate of psychiatric misdiagnosis among patients with hypermobile Ehlers-Danlos syndrome (hEDS). The study found that 94.4%…
A woman with a bun and an illustration of a spine along her spine
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New CCI Research: Understanding the Frequency of Neurosurgical Interventions in Connective Tissue Disorders

A recent study conducted by Ruhoy et al. investigates the frequency of comorbidities and the need for neurosurgical interventions in individuals with connective tissue disorders (CTDs), offering valuable insights into the multifaceted challenges…
11 Kapseln mit gelb und schwarzen Partikeln auf einem Tisch.
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New Pain Killer on the Market: Suzetrigine

Guest Article by Dr. Pradeep Chopra Summary The medicine is sold as Journavx, with the chemical name Suzetrigine. It works by blocking NaV1.8 channels, which are responsible for pain transmission along nerves. It only affects peripheral…
Much More Than That Title
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Much More Than That

One-liner: A family’s journey of finding their identity on the intersection of disability and queerness.  Synopsis:  Much More Than That is a 15-minute short film that delves into the lives of the Pollock family, who share…
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…
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…