Hypermobility
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 a variety of 5 – 10 minute videos of other people across the country […]
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 Partners’ Karina Sturm put together a list with popular fellow zebras, including Billie Eilish, Jameela Jamil, […]
How To Evaluate The Quality Of EDS Research Papers: A Conversation With Markus Bohn, PhD
Over the last few years, the Ehlers-Danlos syndromes have become more than just an afterthought for many researchers across the globe. However, with the growing number of academic papers published, it also got much harder for patients to evaluate the quality of those papers. Moreover, it’s incredibly challenging for people who aren’t scientists to tell […]
Pey Carter and Daughter Abigail Speak About Their EDS Children’s Book
Pey Carter, a public speaker and author from Eau Claire, WI, and their daughter, Abigail Bailey, have a children’s book about Ehlers-Danlos Syndrome in the works: Bendy Bones and Stretchy Skin: An Ehlers-Danlos Story. In addition, Pey just finished a Kickstarter for an Ehlers-Danlos coloring book and is working on a memoir of their own. […]
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 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 […]
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. Journalist Karina Sturm spoke with Jacques Courseault, physical medicine and rehabilitation and sports medicine doctor at Tulane’s Hypermobility and EDS clinic, […]
Bend, But Don’t Break the Bank: Financial Resources for EDS Patients
Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders that affect the connective tissue in the body. Chronic and rare disorders often lead to medical expenses that can overburden the patients’ wallets, deplete their savings, and sometimes result in debt or bankruptcy. Patients commonly experience financial challenges due to numerous medical expenses, including diagnostic tests, […]
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 community. All films are produced by journalist and We Are Visible filmmaker Karina Sturm and sponsored by Chronic Pain Partners. You can […]
