The Chronic Pain Partners Post
A news source by and for the EDS community.
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New CPP ArticlesCervical Spine Instability
Cervical spine instability, especially of the upper cervical spine, is one of the most complex and severe
neurological complications of the Ehlers-Danlos syndromes. However, worldwide, there are only a few experts to support this patient population. Chronic Pain Partners put together a patient guide to support people with EDS getting diagnosed with cervical spine instability and then managing it. Additionally, we spoke with two experts on a recently published paper summarizing diagnostics and management options. |
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New Cervical Spine Instability Publication: The Authors Explain Their Findings
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Chronic Pain Partners Post For CPPs Newsletter, writer Christie Cox speaks with two pioneers in the EDS community: Leslie Russek and Susan Chalela, about their recent publication on upper cervical instability.
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Cervical Spine Instability: Patient Guide
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Chronic Pain Partners Post Over the following months, our CPP media team will develop varying patient guides for EDS and its comorbid conditions to help the patient community get diagnosed and then find proper treatment strategies for those more quickly. Our first guide is the cervical spine instability patient guide.
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Our Chronic Pain Partners media team has worked on an article series on a topic that matters to many parents of children with EDS:
Accommodations at school. Part 1 was shared in our March Newsletter last month. This month, we are sharing Part 2 and a listicle with possible accommodations with you! |
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Parental Preparations Securing Accommodations at K-12 School for Children with Ehlers-Danlos Syndromes
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Chronic Pain Partners Post In this listicle, author Kate Schultz shares varying tips on how to find the best accommodations for children navigating school with Ehlers-Danlos syndromes.
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Two Students Share How They Navigate School With EDS
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Chronic Pain Partners Post For this month's newsletter, writer Crystal Sullivan wanted to hear from two teens navigating the school system with EDS, Amicie Koslow and Lily Hirschson. They spoke about their struggles trying to balance it all and shared what they have learned with their peers who might be dealing with similar issues.
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Researchers Found New Possible Causative Gene for HEDS: MIA3
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Chronic Pain Partners Post Exciting news from Poland! Researchers from the Department of Clinical Genetics at Nicolaus Copernicus University in Torún, Poland, released a preprint of research that may hold the answers to the cause of hypermobile EDS for a part of the patient population: MIA3.
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Kimby Maxson And The Bendy Twisty Zebra: The Story Behind The Book
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The story of Rose, a young girl zebra, is the heart of Kimby Maxson's book The Bendy Twisty Zebra. Rose, her friends, and the book's encouraging message are all based on Kimby's real-life experiences navigating the world of doctors, hospitals, and diagnoses for her
daughter, Jade.
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AI Meets Medicine: Can ChatGPT Unlock Answers to Your Medical Questions?
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By now, you've probably heard the buzz around artificial intelligence (AI) and the hottest new thing in ChatGPT. The CPP media team was curious about what the latest AI tool could do related to answers for medical questions or writing tips on helping EDS patients learn
more about their disorder.
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A winter of the mind: how to escape survival mode
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The Guardian "For many of us, it has been a cold and traumatic year. But, as one reader found, difficult times can lead to new and revolutionary ways of thinking."
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The face of Ehlers-Danlos Syndrome is also the brains behind the quest to find its cure
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MUSC "With over 11,000 followers on the popular social media platform, Gensemer - a post-doctoral scholar at MUSC - is quickly becoming the face of a condition that affects roughly 1.5 million people worldwide."
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Spotlight: Chronic Illness & Disability |
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6 Novels that get chronic illness right
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Brainlesionandme.com "In my last blog post, I shared how I often feel invisible when reading books because I can never find authentic portrayals of chronic illness in fiction. In this post, I share six beautiful novels about chronic illness with authentic and relatable chronically ill characters."
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Judy Heumann, Who Led the Fight for Disability Rights, Dies at 75
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New York Times "Judy Heumann, who spent decades attacking a political establishment indifferent to the rights of disabled people and won one fight after another, ultimately joining and reforming the very establishment she once inveighed against, died on Saturday in Washington, D. C. She was 75.
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Webinar: Hypermobility & Neurodiversity
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EDS UK EDS UK hosted a live webinar with Dr. Jessica Eccles on hypermobility and the connection to neurodiversity. Watch the webinar:
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Thanks for reading The
Chronic Pain Partners Post!
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