Articles

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Folate-Dependent Hypermobility: Researchers at Tulane’s EDS Clinic Look Into New Possible Mechanism For Hypermobile EDS

Posted on April 25, 2023

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 […]

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Folate-dependent Hypermobility: Discussing Tulane’s Recent Paper With Their Scientists

Posted on April 24, 2023

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, […]

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Bend, But Don’t Break the Bank: Financial Resources for EDS Patients

Posted on April 23, 2023

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, […]

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

Posted on April 22, 2023

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 […]

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Two Students Share How They Navigate School With EDS

Posted on April 1, 2023

In last month’s article, “4 Tips on How To Navigate School as a Student with Ehlers-Danlos Syndrome,” we took a very subjective look at the issue of attending high school while living with Ehlers-Danlos syndrome. This month, we wanted to hear from two teens navigating the school system with EDS, Amicie Koslow and Lily Hirschson. […]

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Researchers Found New Possible Causative Gene For HEDS: MIA3

Posted on March 29, 2023

Exciting news from Poland! Researchers from the Department of Clinical Genetics at Nicolaus Copernicus University in Torún, Poland, released a preprint of research that may hold the answers to the cause of hypermobile Ehlers-Danlos Syndrome (hEDS) for a part of the patient population. Specifically, Junkiert-Czarnecka et al. investigated the MIA3 gene in people with hEDS […]

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Kimby Maxson And The Bendy Twisty Zebra: The Story Behind The Book

Posted on March 29, 2023

The story of Rose, a young girl zebra, is the heart of Kimby Maxson’s children’s book The Bendy Twisty Zebra. Rose, her friends, and the book’s encouraging message are all based on Kimby’s real-life experiences navigating the world of doctors, hospitals, and diagnoses for her daughter, Jade. Kimby, a massage therapist and bodywork specialist from […]

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Parental Preparation for Securing Accommodations at K-12 School for Children with the Ehlers-Danlos Syndromes

Posted on March 28, 2023

Please note: the author is based in the United States, so these are resources available in the US. Check with your school or local government education office or website for processes available in your country. The Individuals with Disabilities Education Act (IDEA) is the law in the United States that ensures every child in public […]

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