Misdiagnosis
“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 […]
New Research Study Finds Everything is Connected, As Many Patients Suspected
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 […]
Complicated – the must-watch documentary on Ehlers-Danlos Syndrome
A new documentary on Ehlers-Danlos Syndrome, Complicated, will soon be released. Chronic Pain Partners was honored to preview the film, which dives deep into many of our community’s challenges. Directed by award-winning and Oscar-shortlisted filmmaker Andrew Abrahams and co-produced by TCAPP board member and advocate Donna Sullivan, this film is the most comprehensive and accurate […]
HEDS or HSD: Study Question Diagnostic Criteria
“The 2017 [hypermobile Ehlers-Danlos Syndrome diagnostic] criteria were introduced to improve diagnostic specificity but have faced criticism for being too stringent and failing to adequately capture the multisystemic involvement of hEDS,” states a paper titled “Looking back and beyond the 2017 diagnostic criteria for hypermobile Ehlers-Danlos syndrome: A retrospective cross-sectional study from an Italian reference […]
Part Two: HEDS Researchers Explain Clinician-Associated Trauma
This is the second article in our series covering psychological medical trauma. The first article provided an introduction to what concepts of psychological medical trauma exist and the newly-created concept of clinician-associated trauma. It also introduced a study regarding hEDS patients and clinician-associated trauma. This article will look deeper into the details of this study […]
Part One: EDS & Psychological Medical Trauma: An Introduction
[Content warning: trauma, PTSD, mental healthcare, negative clinician behavior, difficult medical encounters] Have you ever read something that left you speechless? I have so many thoughts and feelings about this article – ones that I can’t express with any sort of coherence at the time. What I can say: clinicians READ THIS (finger pointing down […]
Mitch Martow on his EDS journey and the documentary Bend or Break
For our January Chronic Pain Partners Post, journalist Karina Sturm spoke with Mitch Martow, an EDS advocate from Toronto, Canada. Martow is best known for being the focus of the 2021 released Canadian EDS documentary Bend or Break. In this interview, you’ll get close to Martow and his humorous side while he shares how he […]
Misdiagnoses Happen. Medical Gaslighting Should Not
By Anne Maitland Allergy & ImmunologyMar 16, 2020 Click here for the Original source of this article Op-Med is a collection of original articles contributed by Doximity members. As a non-psychiatrist, I really cannot tell you the difference between the diagnoses of hypochondriasis, malingering, Munchausen/Munchausen by proxy, or the disorders of conversion and somatization. […]
