Posts
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…
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…
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.…
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…
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…
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…
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…
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…
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…
Folate-dependent Hypermobility: Discussing Tulane’s Recent Paper With Their Scientists
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.…
Folate-Dependent Hypermobility: Researchers at Tulane’s EDS Clinic Look Into New Possible Mechanism For Hypermobile EDS
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…
PT Elan Schneider on Neuroplasticity and New Approaches to Treat Chronic Pain
Widespread chronic pain is one of the main symptoms for people with any type of Ehlers-Danlos syndrome and can be debilitating. At the same time, many common treatment options, particularly with pain medication, lead to side effects. But what…