Dealing with EDS

person dropping paper on box

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 […]

selective focus photography of gray stainless steel condenser microphone

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 woman with brown hair is hugging her son, who is in a hospital bed.

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 […]

book opened on white surface selective focus photography

Books 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 are […]

Know your love language?

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 […]

A collage of several images in varying colors of social media icons and the face of a person

EDS Advocates to Follow on Social Media

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, […]

Tips for Ehlers-Danlos Caregivers

The 7-Step Recipe for EDS Caregivers: Tips for Helping Patients

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 […]

A doctor doing an ultrasound on the arm of a patient

A New EDS Clinic Coming to a Town Near You (Via Telehealth)

Chronic Pain Partners is excited to speak with David Jameson Harris, a former McKinsey consultant, about his latest project, a new Ehlers-Danlos syndrome clinic, hopefully offering access to expert EDS care in several states starting in February 2024. CPP’s Karina Sturm spoke with David Jameson Harris about his new EDS clinic, his goals, and how […]