Awareness

Amy Wang-Hiller seated in a wheelchair, holding a violin and bow, wearing a black dress and smiling at the camera.

An Interview with Amy Wang-Hiller: Music, Disability, and Advocacy

This month, we spoke with Amy Wang-Hiller, a violinist living with quadriplegia, hypermobile Ehlers-Danlos syndrome (hEDS), and related complex neuro-connective tissue conditions. As a violin instructor, Amy works with intermediate and advanced musicians navigating changes that affect performance, such as complex neurological disorders. She is also a disability advocate, founder of the InclusiVibe Foundation, and […]

Cover of the Ehlers-Danlos National Foundation 2013 Learning Conference welcome brochure. The cover reads "2013 Learning Conference" and lists the Rhode Island Convention Center and The Omni Providence in Providence, Rhode Island, with conference dates of August 1–3. A nighttime photograph of the Providence skyline appears at the bottom of the cover.

Ten Years and a Time Capsule: What Changed, What Didn’t, and What’s Next

  July is a busy month in the Ehlers-Danlos world. The EDS Society’s Annual Global Learning Conference takes place in Allen, Texas, on July 24-26. It will feature a great lineup of esteemed physician speakers, patient organizations, advocates, and presentations covering this year’s theme: “Exploring Comorbidities in EDS & HSD.” It is also the Ten-Year […]

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 […]

Collage featuring the documentary Complicated: the main film poster shows a silhouetted mother and child holding hands, alongside photos from screening events including a speaker presenting in a theater, attendees and families posing at screenings, and group photos from medical and advocacy conferences.

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.

A bald man with a white coat is sitting across a desk from another man.

“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 […]

bokeh photography of lights

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 […]

woman yelling into megaphone

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 […]