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13

Outcomes of Craniocervical Instability Fusion Surgery in People with EDS

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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, […]

14

Books on Ehlers-Danlos Syndrome

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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 […]

16

A New EDS Clinic Coming to a Town Near You (Via Telehealth)

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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 2024. CPP’s Karina Sturm spoke with David Jameson Harris about his new EDS clinic, his goals, and how patients […]

17

MCAS Patient Guide

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Written by Karina Sturm Reviewed by Dr. Natalie Börsch Edition October 2023 Copyright: Chronic Pain Partners Disclaimer: This is not medical advice, nor is this patient guide an exclusive list of any sort. Please consult with your healthcare provider for all your medical concerns. 1. What is Mast Cell Activation Syndrome (MCAS)? Imagine mast cells […]

18

Dysautonomia Patient Guide

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Version: September 2023 Written by Karina Sturm Reviewed by Dr. med. Natalie Börsch Copyright: Chronic Pain Partners/EDS Awareness Disclaimer: This is no medical advice, nor is this patient guide an exclusive list of any sort. Please consult with your healthcare provider for all your medical concerns. First published here: https://www.chronicpainpartners.com/dysautonomia-patient-guide/ What is Dysautonomia? Dysautonomia is […]

19

New Netflix Documentary ‘Take Care of Maya’ Highlighting Wrongful Child Abuse Allegations

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[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 Henry Roosevelt, also known for his role in “The Social Network,” the documentary delves deep into the lives of the Kowalskis, […]

22

Popular People With Ehlers-Danlos Syndrome

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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 Partners’ Karina Sturm put together a list with popular fellow zebras, including Billie Eilish, Jameela Jamil, […]

23

Lego Oma

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One-Liner:  Lego Oma is a short film about a quirky German grandma who builds wheelchair ramps from Lego.  Summary:  Lego Oma is a 12-minute micro-budget short documentary about Rita Ebel, aka the Lego Oma, a German grandma and wheelchair user. Rita is a few decades old – the saying “age is just a number” couldn’t […]

24

EDSed Episode 4: Dr. Jacqueline Wolf on GI symptoms & Endometriosis

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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 community. All films are produced by journalist and We Are Visible filmmaker Karina Sturm and sponsored by Chronic Pain Partners. You can […]