Posts

A collection of surgical tools
,

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…
Book Cover Disjointed which shows a break between two lava stones with lave in the middle
,

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…
A collage of several images in varying colors of social media icons and the face of a person
, ,

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…
A bright background with a serious looking girl in the foreground. She has long blonde hair and brown eyes. Title: Take care of Maya
, ,

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…
A female doctor with a blue surgical robe and a blue cap holding up a purple stethoscope.
, ,

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…
Caitlin, a woman with long red hair is sitting on a chair in her backyard. The sun is shining. She wears a blue shirt and sits in front of a gigantic orange tree with lots of oranges and green leaves.
, , , , ,

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…
Billie Eilish, a woman with black shoulder-long hair all dressed in black.
,

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…
Dr. Wolf, a woman with short, curly brown hair, black glasses and a yellow face mask.
, , , ,

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…
Jacques Courseault, a black man with black hair and black glasses. He wears a blue shirt and a green bow and lifts up the arm of a black woman with a tattoo on her arm in an examination room.
, ,

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.…
Many cells connected by extracellular matrix
, ,

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…
Elan Schneider, a bald man, wearing white headphones and glasses.
, , , , , ,

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…