Hypermobility
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 […]
Researchers Found New Possible Causative Gene For HEDS: MIA3
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 […]
Kimby Maxson And The Bendy Twisty Zebra: The Story Behind The Book
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 […]
Parental Preparation for Securing Accommodations at K-12 School for Children with the Ehlers-Danlos Syndromes
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 […]
New Cervical Spine Instability Publication: The Authors Explain Their Findings
For Chronic Pain Partners Newsletter, writer Christie Cox speaks with two pioneers in the Ehlers-Danlos community Leslie Russek and Susan Chalela, about their recent publication on upper cervical instability (UCI). Leslie Russek is a DPT, PhD, and Professor Emeritus of Physical Therapy at Clarkson University and an Orthopedic Certified Specialist Physical Therapist with over 30 […]
4 Tips on How To Navigate School as a Student with Ehlers-Danlos Syndrome
Living with Ehlers-Danlos Syndrome (EDS) as a high school student can be especially challenging. The normal struggle of balancing academics, extracurriculars, and social life, all while trying to figure out who you are as a person, is overwhelming for most teenagers and is made more complicated when having to manage a chronic illness. Many times, […]
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 if we could reduce our pain without any negative consequences? Chronic Pain Partners’ Editor-in-Chief Karina Sturm […]
