Managing Ehlers-Danlos
Gut Check: Gluten Intolerance, Celiac Disease, or Mast Cell Reaction?
It is challenging to find the source of our gut problems, so many of us have related to hypermobility. The volunteer media team at Chronic Pain Partners tried to tackle the basics so our readers could have a brief introduction to the variances and testing available for different diagnoses of these often ‘gut-wrenching’ illnesses. Note: We […]
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 […]
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 […]
Two Students Share How They Navigate School With EDS
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. […]
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 […]
AI Meets Medicine: Can ChatGPT Unlock Answers to Your Medical Questions?
By now, you’ve probably heard the buzz around artificial intelligence (AI) and the hottest new thing in ChatGPT. ChatGPT is growing more rapidly than TikTok – currently averaging a user base of 13 million people every day! Talk about a craze, and it got us thinking. The Chronic Pain Partners media team was curious about […]
