History, Culture & Society

Ehlers-Danlos Syndrome: Cultural, Historical, and Societal Perspectives

Ehlers-Danlos syndrome (EDS), particularly its most common subtype hypermobile EDS (hEDS), is increasingly recognized not just as a connective tissue disorder but as a complex, multisystemic condition with wide-ranging cultural, social, and political dimensions. Once confined to rare disease registries, EDS now stands at a crossroads of evolving diagnostic frameworks, shifting public awareness, and deepening patient advocacy. This article explores the historical development, cultural representation, insurance challenges, and advocacy efforts that shape the lived experience of EDS today, with particular attention to developments in the United States and comparisons to international trends.

Historical Evolution and Diagnostic Systems

The 2017 International Classification was designed not only to clarify EDS subtypes but also to improve the chances of discovering a genetic basis for hypermobile EDS (hEDS). The criteria for hEDS were intentionally tightened to create a more homogenous research population, enabling studies like the HEDGE project to better identify a potential genetic marker. However, subsequent research has shown that people who meet criteria for Hypermobility Spectrum Disorder (HSD) experience nearly identical symptoms, functional limitations, and treatment responses as those diagnosed with hEDS. This has led to calls for merging hEDS and HSD into a unified diagnostic category. Additionally, hEDS is increasingly recognized as a multisystemic condition rather than a primarily connective tissue disorder. It involves autonomic, neurological, gastrointestinal, and immune system dysfunction in many patients. A new classification system that reflects this broader understanding is currently in development by the International EDS Consortium and is expected to be widely adopted upon release.

The roots of EDS stretch back to antiquity. Hippocrates described individuals with loose joints and soft skin in 400 BC, but EDS was not defined as a discrete medical entity until the early 20th century. In 1901, Edvard Ehlers, a Danish dermatologist, documented clinical signs of skin hyperextensibility and joint laxity. French physician Henri-Alexandre Danlos expanded on these findings in 1908, particularly noting tissue fragility. The eponymous term "Ehlers-Danlos syndrome" was officially adopted in 1936 by English physician Frederick Parkes Weber.

As awareness grew throughout the mid-20th century, classification systems emerged to better describe the diverse presentations of EDS. The Berlin nosology (1970) categorized subtypes based primarily on observable traits. The Villefranche nosology (1997), a major international milestone, consolidated EDS into six subtypes and introduced standardized diagnostic criteria. However, the absence of molecular testing for many forms, especially hEDS, remained a significant limitation.

In response, the International EDS Consortium published a revised classification in 2017, recognizing 13 subtypes based on clinical and genetic features. Hypermobile EDS remains the only subtype without a known genetic marker, creating challenges in both diagnosis and legitimacy. The classification also introduced "hypermobility spectrum disorders" (HSD) to describe those with symptomatic joint hypermobility who do not meet full hEDS criteria. This shift reflects an evolving understanding of EDS as a spectrum disorder and lays the foundation for future genetic discovery.

Public Awareness and the Zebra Symbol

Cultural awareness of EDS has grown significantly in the 21st century, thanks in large part to advocacy, media representation, and the embrace of the zebra as a symbol of rare disease. In medical school, students are taught: "When you hear hoofbeats, think horses, not zebras." For the EDS community, this saying encapsulates a long history of being overlooked, misdiagnosed, or dismissed. The zebra has become a powerful emblem of medical rarity and patient individuality—no two zebras have the same stripes, just as no two people with EDS experience the condition the same way.

Each May, during EDS and HSD Awareness Month, The Ehlers-Danlos Society organizes worldwide campaigns to increase visibility. Landmarks are lit in zebra stripes, online campaigns circulate personal stories and infographics, and communities host educational webinars. In 2025 alone, the campaign raised over $100,000 and reached audiences in more than 30 countries. Many U.S. states have passed resolutions officially recognizing the month, a symbolic but significant step in acknowledging the condition at the state level.

Public awareness is also evident in internet search trends and health information-seeking behavior. Google search data reveal that public interest in EDS spikes during awareness campaigns and following celebrity disclosures. This has a compounding effect: awareness leads to more diagnoses, which in turn fuels advocacy.

Representation in Media, Arts, and Athletics

The visibility of Ehlers-Danlos syndrome (EDS) in media and culture has accelerated in recent years, though it remains uneven. Celebrities such as Billie Eilish, Jameela Jamil, Halsey, and Daniel Browning Smith have publicly disclosed their diagnoses, helping reduce stigma and promote understanding. Smith, who holds the Guinness World Record for the most flexible person, has helped spotlight the extreme end of hypermobility, offering a powerful example of how hEDS can manifest. Increasingly, other public figures are also coming forward to share their experiences with EDS, using their platforms to advocate for awareness, accessibility, and research.

Artists like Rebecca Yarros and Kate Stanforth incorporate their lived experiences into their creative work—Yarros through her bestselling novels and Stanforth through her choreography and dance performances. In athletics, Paralympians such as Marjolein Buis and world champion gymnast Kristle Lowell have spoken openly about the challenges of training and competing while managing the symptoms of EDS.

Despite this progress, EDS remains largely underrepresented in mainstream literature, film, and television. Accurate portrayals often come from memoirs, blogs, documentaries, and patient-authored essays. In parts of Europe, advocacy groups have turned to creative expression—such as photography exhibits and theater projects—to raise awareness and reduce stigma by conveying the lived realities of people with EDS.

Within sports, particularly disciplines like gymnastics and ballet, hypermobility is often seen as an asset. This cultural emphasis can delay diagnosis, as signs of injury, fatigue, or joint instability may be misattributed to overtraining or poor technique rather than a genetic condition. As a result, many athletes go untreated for years, despite experiencing significant symptoms.

Disability Recognition and Insurance Challenges

In the United States, disability recognition for EDS is fraught with systemic challenges. The Social Security Administration does not list EDS in its Blue Book of qualifying conditions. Applicants must prove their symptoms meet criteria for other conditions, such as joint dysfunction, migraines, or dysautonomia. This often requires extensive documentation and legal advocacy, with high denial rates—especially for hEDS, which lacks a confirmatory test.

Private insurance plans often deny essential therapies such as prolonged physical therapy, autonomic testing, or off-label medications. Adults with EDS incur more than $21,000 in excess annual healthcare costs compared to controls. Fragmented care systems place the burden of care coordination on the patient, especially in underserved or rural areas.

The Role of Advocacy Organizations

Non-profit organizations, particularly The Ehlers-Danlos Society, have played a central role in increasing public awareness, supporting research, and educating clinicians. Their initiatives include:

Global symposia and conferences
Continuing Medical Education (CME) programs
Patient registries and collaborative research (e.g., HEDGE)
Multilingual educational tools

The Society's EDS ECHO program has trained hundreds of clinicians via telehealth. Other groups, like the Vascular EDS Collaborative, use participatory research to ensure that patient priorities shape research design. According to JAMA, most funding for these organizations comes from individual donations rather than federal or pharmaceutical sources, underscoring their grassroots foundation.

Intersectionality, Stigma, and Psychosocial Impact

EDS disproportionately affects women and is often misunderstood due to its invisible and fluctuating symptoms. Patients report being dismissed, misdiagnosed, or disbelieved—experiences that can delay care and contribute to emotional distress. Childhood bullying, overprotection, or isolation is common, particularly among those with early-onset symptoms.

Race, gender, and socioeconomic status all impact access to care and diagnosis. People of color may face longer diagnostic delays and greater provider skepticism. Those without financial resources or insurance may forgo specialty care altogether. Psychiatric comorbidities such as anxiety, depression, and PTSD are frequent, exacerbated by years of invalidation and functional impairment.

Online Communities and Cultural Shifts

Faced with institutional barriers, people with EDS have created vibrant online communities. Facebook groups, YouTube channels, Reddit forums, and podcasts offer educational content, emotional support, and practical tools. Many patients report first learning about EDS through social media, not from clinicians. These platforms foster connection and resilience, especially for those in geographic or cultural isolation. They also amplify advocacy efforts and provide resources often unavailable in mainstream healthcare settings.

Popular Podcasts
- Bendy Bodies Podcast – Medical insights and lifestyle support
- Hypermobility Happy Hour – Patient advocacy and lived experience
- Help! I’m Hypermobile – Practical adaptation tips
- Finding Your Range (Jeannie Di Bon) – Movement and pain management
- Whealth Podcast – Wellness and chronic illness
- Hacking Hypermobility – Functional and integrative medicine
- Fantastic Pains and How We Hide Them – Patient storytelling with humor

Major Facebook Groups
- Ehlers-Danlos Syndrome Support Group
- Living with Ehlers-Danlos Syndrome
- EDS Zebras Unite!
- hEDS & HSD POTS/Dysautonomia Support
- EDS Mamas (for parents and caregivers)

Leading YouTube Channels
- Bendy Bodies Podcast (video format)
- Jeannie Di Bon – Movement Specialist
- EDS Awareness – Interviews and education
- Tina Wang, PT, DPT – Physical therapy and dysautonomia
- Doctor Diana Driscoll – Integrative care

U.S. Government and Research Priorities

Compared to many other chronic or rare conditions, Ehlers-Danlos syndrome (EDS) receives disproportionately low levels of government research funding. For example, while the National Institutes of Health (NIH) allocates approximately $3 billion annually to HIV/AIDS and $135 million to lupus, direct funding for EDS is estimated to be less than $2 million per year. Tracking this funding is challenging, as EDS is not consistently categorized as a standalone area. Instead, it is often grouped under broader categories such as connective tissue disorders or chronic pain.

This funding gap is particularly stark for hypermobile EDS (hEDS), which lacks a known genetic marker. Because NIH funding mechanisms often prioritize conditions with defined molecular causes, hEDS has struggled to gain traction in traditional research pipelines. As a result, much of the progress in hEDS research has been driven by patient-led organizations and nonprofits rather than through federal investment.

Most federally supported EDS research to date has focused on identifying the genetic basis of hEDS or studying the molecular features of rarer, gene-defined subtypes. However, there remains a significant lack of funding for treatment development, symptom management, and quality-of-life research—areas of pressing concern for most patients.

While agencies such as the National Center for Advancing Translational Sciences (NCATS) and the Office of Rare Diseases Research (ORDR) support initiatives like the Rare Diseases Clinical Research Network (RDCRN), these efforts reach only a small fraction of the EDS community. The Centers for Disease Control and Prevention (CDC) has not developed disease-specific educational or surveillance resources for EDS, leaving most public awareness and epidemiological initiatives to patient advocacy groups and international collaborators.

One major research effort, the HEDGE study—led by The Ehlers-Danlos Society in partnership with international scientists—represents the most comprehensive attempt to identify the genetic basis of hEDS. While a definitive gene has not yet been identified, the study has contributed valuable insights into symptom clusters and diagnostic refinement.

Summary

Ehlers-Danlos syndrome (EDS), particularly hypermobile EDS (hEDS), has evolved from a narrowly defined connective tissue disorder to a recognized multisystemic condition affecting numerous organ systems and quality of life. Public awareness has grown through advocacy, media visibility, and online communities, though EDS remains underrepresented in policy, funding, and healthcare education. The 2017 classification system aimed to standardize diagnosis and support genetic discovery but also introduced a distinction between hEDS and Hypermobility Spectrum Disorders (HSD) that is now being reconsidered due to overlapping symptoms. A new diagnostic framework is in development to reflect clinical realities more accurately.

Patients continue to face challenges with disability recognition, insurance coverage, and access to coordinated care. Research funding remains limited, particularly for hEDS, which lacks a molecular marker. Advocacy organizations have played a central role in addressing these gaps. Ongoing efforts focus on improving diagnosis, equity in care, and integration of patient experiences into research and policy development.