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 […]
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 […]
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 […]
What Chronic Pain Partners has done for the community lately.
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, […]
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 […]
The Ehlers-Danlos Syndromes may be considered a group of (mostly) rare connective tissue disorders; however, our community is more diverse and stronger than ever, with many advocates sharing their experiences and knowledge via social media. Chronic Pain Partners put together a list of EDS advocates meant to be a work in progress and, of course, […]
One of the earliest lessons in flight training is the aviation order of operations: Aviate, Navigate, Communicate. In pilot training, those words mean the following. Aviate: Use the skills to maintain control of the aircraft. Navigate: Know where you are, and where you intend to go. Communicate: Let someone know your plans and needs. Maybe […]