Entries by karinabutterfly

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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% of patients were initially misdiagnosed with psychiatric conditions—often by physicians without psychiatric expertise—before receiving an accurate diagnosis of hEDS. Many […]

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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 faced by this patient population. What’s the study about? CTDs are a diverse group of disorders that impact connective tissue, leading to […]

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New Pain Killer on the Market: Suzetrigine

Guest Article by Dr. Pradeep Chopra Summary What is Suzetrigine? Suzetrigine, marketed under the brand name Journavx, is a novel non-opioid analgesic recently approved by the U.S. Food and Drug Administration (FDA)for the treatment of moderate-to-severe acute pain in adults. Developed by Vertex Pharmaceuticals, Suzetrigine represents the first new class of pain medication approved in […]

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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 deep connections that transcend their heritage. Jack and his mother Maria both live with Ehlers-Danlos syndrome, a rare and […]

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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 fighting her way through life-threatening challenges, fierce rivalries, and the unrelenting physical toll of her training. […]

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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 begins by examining how disabled people have been marginalized, stereotyped, or entirely omitted from the mainstream media, which shape our understanding […]

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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 speaking, she creates a podcast to amplify the voices of those who share her experience. Through candid conversations, Maya […]

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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 associated with hEDS has been published, pinpointing mutations in the Kallikrein gene family.  The Kallikrein gene family, known for encoding enzymes […]

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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 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 […]

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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 filmmaker Andrew Abrahams and co-produced by TCAPP board member and advocate Donna Sullivan, this film is the most comprehensive and accurate […]

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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 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, […]

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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 condition in a series of listicles you will find on our website over the next months. We are […]

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