Managing Ehlers-Danlos
Documentary Films on Ehlers-Danlos Syndrome
Over the last year, the Ehlers-Danlos Syndromes have been increasingly present in media. Several films have depicted different aspects of the lived experience of families with Ehlers-Danlos Syndromes and comorbid conditions around the globe. The following is a dynamic list of documentary films on EDS and its comorbid conditions based on the release date. Ehlers-Danlos […]
Find Answers Faster: The EDS411 Living Library
Discover the EDS411 Living Library App Imagine a place where you can find reliable, community-sourced information about Ehlers-Danlos Syndrome (EDS) without the endless search through disorganized forums or the distracting noise of social media. Welcome to EDS411 Living Library, your ultimate resource for navigating EDS with confidence and ease brought to you by EDS S.H.A.R.E. […]
Top Ten Reasons EDS SUCKS!
The votes are in! One hundred and sixty-seven (167) of you responded to our survey about the things that SUCK about EDS. What made it into the top spot as the worst of all? Where did your dissatisfactions rank? Scroll down to find out! How we tallied the results: Each respondent received the same 19 […]
Podcasts 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 condition in a series of listicles you will find on our website over the next months. We have […]
A Mother’s Day Shout Out from An EDS Mom and The Producer of Complicated
As a parent, it is hard to witness your child suffering with symptoms and physical pain. As mothers, we are often looked to, to make everything better, right? When my kids started having medical issues, I quickly learned that there was no parenting book to teach how to comfort and support your child when an […]
Making Misdiagnosis and Misunderstanding a Thing of the Past
What Chronic Pain Partners has done for the community lately.
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 complications of the Ehlers-Danlos syndromes, causing many affected individuals symptoms such as headaches, severe full body pain, dizziness, nausea, blurred vision, paresthesia, fatigue, weakness, […]
Know Your Love Language? Learn to Speak it Well Despite Chronic Illness
Did you know each of us shows affection and love in different ways? No matter who you might be cuddled up to this Valentine’s Day, it’s important to understand that a successful intimate relationship is a constantly evolving process of tuning in, adapting, and forging deeper connections, compassion, and caring for one another. Becoming aware […]
