Awareness
Things People Have Done That Made Me Feel More Comfortable as Someone with Chronic Illness
Chronic illness can be isolating in ways that are hard to articulate, even to the people who love you most. It’s not just the physical reality but also the guilt of canceling plans, the exhaustion of explaining yourself, and the fear that your illness is impacting your relationships. I have found great value in people […]
Why May is The Moment for “Complicated”
We didn’t plan it this way, but the release of our documentary film, Complicated, on Apple TV in May feels almost fated. Between Ehlers-Danlos Syndrome (EDS) Awareness Month and Mother’s Day, the timing reflects the very heart of this project that we started nine years ago. To see it come to fruition has been incredible, and I […]
Cerebral Venous Outflow Disorders: What it is and Why EDS Patients Should Know About it
Cerebral venous outflow disorders describes a spectrum of conditions related to issues with how fluid drains from the brain.Experts are observing a connection between connective tissue disorders (like hypermobile EDS) and cerebral venous outflow disorders. Cerebral venous outflow disorders can cause pressure headaches (that often worsen when lying flat), dizziness, pulsatile tinnitus (a rare vascular form of tinnitus), neck pain, tenderness at the base of skull, vision disturbances, ‘brain fog’, and cognitive dysfunction. Cerebral venous outflow disorder may look different when it presents in individuals with connective tissue disorders than in individuals without, creating diagnostic challenges.
“It’s All in Your Head”: New Study Confirms What hEDS Patients Have Been Told for Decades
A landmark study has revealed what most people with hypermobile EDS (hEDS) already knew since disease onset: a staggering rate of psychiatric misdiagnosis among patients with hypermobile Ehlers-Danlos syndrome (hEDS). The study found that 94.4% of patients were initially misdiagnosed with psychiatric conditions—often by physicians without psychiatric expertise—before receiving an accurate diagnosis of hEDS. Many […]
22 Ways to Celebrate EDS and HSD Awareness Month
20 free reasons plus two more at no extra charge! May is designated as Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month. Throughout the month, there are fun ways to show your stripes and help raise awareness of these often-overlooked conditions. Check out some of the ways below that you can help strengthen […]
We’re Not Confused – The System Is: Community Survey Shouts for EDS/HSD Classification Change
May 2025By Maggie Buckley, BCPA and Christie CoxEDS Patient Advocates and Community Researchers Editor’s Note This article was originally developed as a proposed abstract for submission to The Ehlers-Danlos Society’s scientific symposium. Our goal was to share real data from patients on how the current classification system for EDS and HSD affects diagnosis, care, and […]
Hypermobile and Hypersensitive? Understanding Sensory Processing Today
Sensitivity in the Spotlight and Why Labels Matter More Than Ever In today’s politically charged climate, the act of labeling—whether as a diagnosis, identity, or personality trait—has become a battleground. With the current administration rolling back Diversity, Equity, and Inclusion (DEI) initiatives, discussions around neurodiversity, sensitivity, and individuality are under scrutiny. But what happens when […]
Much More Than That
One-liner: A family’s journey of finding their identity on the intersection of disability and queerness. Synopsis: Much More Than That is a 15-minute short film that delves into the lives of the Pollock family, who share deep connections that transcend their heritage. Jack and his mother Maria both live with Ehlers-Danlos syndrome, a rare and […]
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