Posts

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…
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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…
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 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…
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.
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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…
Billie Eilish, a woman with black shoulder-long hair all dressed in black.
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Popular People With Ehlers-Danlos Syndrome

Over the last years, more and more famous Hollywood stars have come out with having been diagnosed with Ehlers-Danlos syndrome, sharing their journey on social media and with the press to raise awareness. For EDS Awareness Month, Chronic Pain…
Dr. Wolf, a woman with short, curly brown hair, black glasses and a yellow face mask.
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EDSed Episode 4: Dr. Jacqueline Wolf on GI symptoms & Endometriosis

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…