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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. Chronic Pain Partners put together a list of EDS advocates meant to be a work in progress and, of course, […]
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 […]
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 […]
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 […]
[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, […]
Content: Becoming a Professional Patient: Why is it Necessary? When living with a rare condition like Ehlers-Danlos syndrome (EDS), it is essential to become an active participant in managing your health as a patient because most doctors have little knowledge about EDS. At the same time, the healthcare system is not designed to treat complex […]
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 a variety of 5 – 10 minute videos of other people across the country […]
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, […]
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 […]
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 […]
A recent publication by researchers at Tulane University hypothesizes MTHFR mutations lead to folate deficiency, resulting in hypermobility. The researchers also propose these mutations may cause or contribute to a form of hypermobile EDS. Journalist Karina Sturm spoke with Jacques Courseault, physical medicine and rehabilitation and sports medicine doctor at Tulane’s Hypermobility and EDS clinic, […]
A recent publication by scientists at Tulane University’s EDS clinic proposes a possible new mechanism behind hypermobility: folate dependency. The researchers hypothesize that MTHFR mutations may lead or contribute to a form of hypermobile EDS and present a treatment with 5-methyltetrahydrofolate to improve the patient’s symptoms. Tulane’s EDS Clinic Two years ago, Tulane University’s EDS […]
