If you’ve landed here, maybe you have been quietly researching traits of autism, looking up screening questionnaires, and wondering if you could be part of the recently reported 39% of autistic patients that have co-occurring Ehlers-Danlos Syndrome (EDS) and hypermobility spectrum disorder (HSD). Before I ever sat across from an evaluator, I spent months reading, […]
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 […]
Many timesI have been called resilient. A title inflicted on melike a brilliant,gleaming badge of honor. But it was one that I never asked for.Worn without choiceor the ability to claima different perspective,a different name. I give myself a new description,a title that encompassesthe pain and infliction. I am persistent. Resilience is to bendand not […]
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 […]
A wake-up call to the medical community sent directly with data from commercial health insurers A new study focused on the prevalence of multisystem diagnoses among hypermobile Ehlers-Danlos Syndrome (hEDS) patients sheds light on a critical aspect of this complex condition: the widespread systemic impact it has on the body and the connection to other […]
This is the sixth and last article in the clinician-associated trauma series. Soon, all six articles will be released in a downloadable e-book available at Chronic Pain Partners’ website. If you have any questions or comments, feel free to leave a comment below or email the author of the series at kate [at] chronicpainpartners [dot] […]
Over the past several months, Chronic Pain Partners has published a series of articles about clinician-associated trauma based on the paper “Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes” by Colin M.E. Halverson, Heather L. Penwell, and Clair A. Francomano. The last four Chronic Pain Partners articles […]
Content warning: This article discusses difficult encounters and experiences with medical clinicians that some readers may find upsetting or triggering. Please take care of yourself as you see fit. I did not receive an hEDS [hypermobile Ehlers-Danlos syndrome] diagnosis until I was 29 years old, and until 2023, I did not feel one ounce […]
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