May 2025
By Maggie Buckley, BCPA and Christie Cox
EDS 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 mental health—and to offer recommendations for how the upcoming 2026 reclassification could better meet patient needs.
When the Society announced that they would be launching their own patient survey to inform the reclassification process (Note: participants are required to join their DICE patient database registry which has privacy concerns), we decided to reroute. Instead of waiting on the planned future proceedings, we’re releasing our data now—directly to the community it came from. This report reflects the voices of 675 patients who are already living the consequences of diagnostic uncertainty, misclassification, and medical confusion. It’s time these experiences shaped the future.
Why Classification Matters: Understanding Nosology
Nosology is the scientific process of classifying diseases. Think of it as the organizational system medicine uses to describe and group illnesses based on their causes, symptoms, and how they show up in the body. In rare and complex conditions like Ehlers-Danlos syndromes (EDS) and Hypermobility Spectrum Disorder (HSD), nosology determines how your diagnosis is labeled—and whether that label opens or closes doors to care.
Reclassification happens when scientific knowledge evolves. As new research emerges and more patients are studied, experts revisit classification systems to ensure they still reflect current understanding. This is especially common in rare disorders, where the landscape is still being defined.
The 2017 EDS reclassification introduced 13 subtypes—but it also left gaps. For example, hypermobile EDS (hEDS) remains the only subtype without a known genetic marker, leaving many patients in diagnostic limbo. As we approach the next major revision in 2026, the hope is that the nosology will finally catch up to the complexity of patient experiences.
This survey was our way of asking: Where is the system working—and where is it falling apart?
Who Responded to the Survey?
Gender Identity: Most respondents identified as female (592), with representation from non-binary (55) and male (28) community members.
Age Range: The majority were between 25 and 54 years old, with the highest concentration in the 25–44 range.
Location: 540 respondents were based in North America, though many also represented the global EDS/HSD community.
Diagnosed—But Still Left Wondering
582 respondents had received a formal diagnosis. Of those, 504 were diagnosed with hypermobile EDS (hEDS). 320 were diagnosed within the last 1–5 years, showing that diagnosis rates are increasing—but not necessarily improving patient understanding. 477 respondents said they felt familiar with the criteria for their diagnosis, but 213 described the classification system as “somewhat unclear.” For many, having a diagnosis hasn’t cleared up the confusion—it’s simply given them a label without a map.
Diagnostic Delays, Denied Care, and Lingering Gaps
404 people said they experienced delays in diagnosis due to unclear or inconsistent classification criteria. 384 were denied treatment, accommodations, or referrals, often because of misclassification or lack of formal recognition. 397 reported that receiving a diagnosis improved access to care—but for many, this came only after many years of searching and advocacy.
Mental Health and Medical Uncertainty
This isn’t just an academic issue. It’s emotional and deeply personal. 279 participants said the classification process negatively impacted their mental health. 416 respondents reported feeling isolated due to the complexity of their diagnosis and lack of clear information from the medical system. Words like frustrated, invisible, and exhausted came up frequently in comments from patients who felt their classification didn’t capture their experience—or worse, left them disqualified from care.
What Patients Say They Need
Patients weren’t vague about what would help. Here’s what they said would make a difference:
- Plain-language definitions of each subtype
- Diagnostic flowcharts or decision trees to guide patients and providers
- Patient handbooks outlining symptoms, management options, and explanations
- Educational resources for clinicians to standardize care and improve diagnostic accuracy
- Mental health support integrated into the diagnostic process, not treated as an afterthought
What the Data Reveals About Life in Limbo
When we step back and look at the survey data through the lens of lived experience, several findings stand out—not just as numbers, but as a mirror reflecting the frustration, fatigue, and unmet needs of an entire community lying in wait for better answers.
First, the overwhelming majority of respondents identified as female or non-binary, with more than 86% of participants falling outside the traditional male demographic often centered in clinical research historically as women were not studied. It highlights what many in the community already know: EDS and HSD are disproportionately experienced—and often dismissed—by women and gender-diverse individuals.
Second, the dominance of hypermobile EDS (hEDS) diagnoses—accounting for nearly 76% of all respondents—raises questions about diagnostic criteria, clinical awareness, and support systems. The lack of a genetic marker for hEDS continues to be a point of both scientific complexity and patient distress.
The survey also shows that while diagnosis may improve access to care, it is far from a guaranteed solution. Mental health effects and feelings of isolation are widespread. Patients are asking for better tools, clearer communication, and an improved classification system that reflects their lived reality, not just medical textbook definitions.
Patients spoke up asking for clearer communications including apps, patient guidebooks and simpler one page overviews on the disorders.
A Call to Those Leading the Reclassification: Hear Us
To the clinicians, researchers, organizational leaders, and medical policymakers involved in the 2026 reclassification process: we see you. We appreciate the depth of work it takes to build a nosology grounded in science. But we need you to hear us, too. Really listening as ‘nothing about us without us’ should be the main priority in any disease nosology – involving the patient community’s voices and needs.
The patient community is not whispering. We are shouting—now through this data, our lived experience, and the consistent, collective call for clarity, access, and care that works. We are not fringe cases living on the margins of your efforts. We are the evidence you’ve been missing.
As you prepare to gather in Toronto this September for The Ehlers-Danlos Society’s scientific symposium to decide the diagnostic criterion’s future labelling system, we ask that you not only review research and revise criteria—but that you reflect on the real-world consequences of diagnostic ambiguity and the emotional toll of being left in limbo. Or having an existing diagnosis “removed” by downgrading the scale. There’s a real impact on us. The system you shape now will ripple out into the lives of patients around the world for the next decade and beyond. Patients matter as much if not more than the provider community you seek to educate.
Here are concrete ways to incorporate our feedback into the symposium and ongoing reclassification process:
- Include patient-led data in scientific discussion panels
- Host dedicated patient voices roundtables before Toronto
- Incorporate this survey data into your upcoming EDS Society patient survey
- Create a crosswalk between clinical criteria and patient language
- Acknowledge mental health impact as part of the nosology explicitly denying the “it’s all in our head” theories
- Pledge transparent communication and ongoing community feedback loops
Seriously, we NEED more than a one page diagnostic checklist surveying only a few of our hypermobile body parts as THE decision maker. You must do better!
We urge you to treat this moment not only as an academic exercise—but as an inflection point in how we define, support, and treat people living with EDS and HSD. Classification should be a bridge to care, not a gate that keeps people out.
We are not confused. We are informed, exhausted, and long overdue to be heard.
Let the next classification be the one that finally listens.
If you want to know more and see the data first-hand, we’ve created a short video showing the actual results to each question in the survey, including number of respondents to each question and their votes. Watch the video summary and share it.
