hEDS Medical Care Providers
Medical care for individuals with hypermobile Ehlers-Danlos syndrome (hEDS) presents unique challenges due to the condition’s complex, multisystem nature and the absence of a dedicated medical specialty. Most clinicians receive little or no formal education on hEDS, leading to widespread provider knowledge gaps, diagnostic delays, and fragmented care. Patients often must travel long distances for specialty evaluation or rely on providers with limited understanding of the condition.
Because of this, patients frequently become the coordinators of their own care—organizing documentation, educating providers, and navigating a system not designed for rare, poorly understood disorders. Even when multidisciplinary clinics are available, long wait times and inconsistent quality of care make self-advocacy essential. This article explores not only the structural challenges within the healthcare system, but also the patient-level strategies that have been empirically shown—or theoretically supported—to improve access, satisfaction, and health outcomes for people with hEDS. These include specific approaches for primary, specialty, and emergency care, as well as adaptations for children, marginalized populations, and those with additional vulnerabilities.
Why There Is No One Specialist for hEDS
hEDS does not fall under a single medical specialty. This is due to several factors
Multisystem involvement: hEDS affects joints, connective tissue, the autonomic nervous system, gastrointestinal function, respiratory capacity, and more. Most medical providers are trained to focus on individual systems and may overlook the broader pattern.
Lack of definitive testing: There is currently no genetic test or biomarker for hEDS, which makes diagnosis more subjective and less emphasized in clinical training.
Rheumatology disengagement: Although rheumatologists were historically involved in EDS care, many now refer patients elsewhere, especially since hEDS is not inflammatory in nature.
Historical underestimation: hEDS has often been described as a benign hypermobility condition, leading to under-recognition of its disabling symptoms.
Fragmented healthcare system: The U.S. medical system lacks an integrated approach to managing chronic, multisystem disorders like hEDS, resulting in disjointed and inconsistent care.
Medical Education and Provider Knowledge Gaps
Most medical professionals receive little to no formal education on hEDS. When Ehlers-Danlos syndromes are covered, the emphasis is typically on rare and life-threatening forms such as vascular EDS.
hEDS is often mischaracterized as harmless joint hypermobility.
Symptoms are treated in isolation, such as dizziness referred to cardiology or pain to orthopedics, without recognizing a unifying diagnosis.
The 2017 diagnostic criteria are unfamiliar to many clinicians, and proper use of the Beighton score is inconsistent.
Most individual physicians have limited knowledge of hEDS, leading to frequent delays in diagnosis, misattribution of symptoms, and suboptimal care. Patients consistently report low satisfaction with healthcare, citing a lack of provider awareness, inadequate recognition of multisystem involvement, and insufficient support for symptom management. This knowledge gap is a major barrier to effective care and is associated with lower health-related quality of life and reduced self-efficacy for managing symptoms.
How Providers Become Knowledgeable About hEDS
There is no formal medical specialty or fellowship for hEDS. Providers who become skilled in its management usually do so through
Continuing medical education, including resources from The Ehlers-Danlos Society and related organizations
Collaboration with peers who treat hEDS or related conditions such as POTS or mast cell activation
Independent study of current literature and patient-reported outcomes
Direct experience treating patients with complex multisystem symptoms
Quite a few medical providers who specialize in hypermobile Ehlers-Danlos syndrome (hEDS) are personally connected to the condition—either because they have it themselves or a close family member does. This is not unusual in rare or underdiagnosed conditions, especially those that are complex, poorly understood, and often dismissed by mainstream medicine. Personal experience can be a powerful motivator for pursuing deep expertise in a condition that otherwise receives limited attention, advocating for patients who face the same disbelief or difficulty accessing care, and developing empathy for the lived experience of chronic pain, fatigue, and multisystemic symptoms. In interviews, memoirs, and online communities, many hEDS-aware physicians, physical therapists, and researchers have shared that their personal connection was a turning point in their understanding and commitment. This has helped push the field forward—especially in the face of historical neglect. However, this also means there's a gap in formal training: many providers learn through lived experience rather than standardized medical education.
Many providers who are considered hEDS-aware develop their knowledge through a combination of personal experience, clinical exposure, patient advocacy, and cross-disciplinary collaboration.
Clinics in the U.S. That Treat hEDS
Several multidisciplinary or EDS-aware clinics exist in the U.S.
The EDS Clinic (Telehealth) – Nationwide, with immunology-focused multidisciplinary care.
Mayo Clinic (Jacksonville, FL) – Geneticist-led diagnosis and referrals.
Hypermobility & EDS Clinic at The Fascia Institute (New Orleans) – Fascial and structural therapies.
NYIT Ehlers-Danlos Syndrome/Hypermobility Treatment Center (NY) – Integrated physical medicine, cardiology, and rehab.
Gates Institute at University of Colorado (Aurora) – Research-based multidisciplinary care.
Spero Clinic (Fayetteville, AR) – Neuro-rehab for EDS, POTS, and MCAS patients.
These clinics vary in approach—some emphasize structural rehab, others autonomic care or whole-body integration.
Real-Life Experiences at hEDS Clinics
Patients report mixed experiences at hEDS clinics
Long Wait Times: Waitlists often exceed a year.
Validation Matters Most: Positive feedback often centers on feeling heard and understood. Rejection, not feeling heard or misdiagnosis are common traumas.
Variable Provider Attitudes: Some providers offer excellent multidisciplinary support; others dismiss or minimize symptoms. Patients reports varying outcomes even at the same clinics.
Best Outcomes: Clinics integrating PT/OT, cardiology, allergy/immunology, and mental health often receive the highest praise. Efficient diagnosis, coordinated referrals lead to positive outcomes for patients.
Travel
People with hEDS often travel significant distances for specialized care because
Local providers may lack expertise in hEDS, leading patients to seek out recognized specialists or multidisciplinary clinics that are often located in larger cities or academic medical centers.
Specialized hEDS clinics are relatively few and far between in the U.S., with long waitlists and limited geographic distribution.
Telehealth helps reduce travel, but many patients still require in-person visits for diagnostic assessments, physical therapy, or specialized treatments.
Patients often travel multiple hours or even out of state to access knowledgeable providers, especially when local healthcare systems are not equipped to manage complex multisystem conditions like hEDS.
Surveys and patient reports commonly indicate that traveling several hours or out-of-state for care is a frequent experience among people with hEDS, often contributing to the burden of managing the condition.
Patient Dissatisfaction
Patients with greater impairment in daily functioning and multiple comorbidities report higher dissatisfaction with hEDS care.
Longer diagnostic delays contribute significantly to patient dissatisfaction.
Those experiencing more severe pain, fatigue, and mobility disability tend to be less satisfied with their healthcare.
Higher emotional distress and lower self-efficacy for symptom management are associated with lower satisfaction.
Diagnostic delay and lack of provider knowledge especially affect patients with complex, multisystem involvement and those diagnosed after recent reclassification of hEDS criteria.
Professionally active patients often report higher dissatisfaction.
Patients who perceive stigma or lack of understanding from healthcare professionals express more dissatisfaction.
Research and patient surveys indicate that dissatisfaction rates in hEDS care are often notably higher than in conditions like diabetes, arthritis, or asthma, where established care pathways and provider education are more developed. Large North American studies highlight the need for better provider education, multidisciplinary care, and patient-centered approaches to improve satisfaction and outcomes.
Inadequate Number of Trained Medical Providers
There is not an adequate number of trained doctors to meet the needs of people with hEDS. The limited number of providers knowledgeable about hEDS, combined with the multisystem complexity of the condition and lack of formal specialty training, creates significant barriers to care.
Impacts on patients include
Delayed or missed diagnosis, sometimes for years or decades.
Misdiagnosis or symptom dismissal, leading to inappropriate or ineffective treatments.
Difficulty accessing coordinated, multidisciplinary care, which is often needed for complex symptoms.
Increased travel burden, as patients often must seek specialists far from home.
Lower patient satisfaction and trust in healthcare providers.
Worsened health outcomes due to unmanaged symptoms and complications.
Higher emotional and financial stress from navigating fragmented care and frequent doctor visits.
Overall, this shortage contributes to poorer quality of life and greater disability for many people living with hEDS.
Insurance
There is limited direct evidence comparing outcomes for patients with hypermobile Ehlers-Danlos syndrome (hEDS) in health maintenance organizations (HMOs), Medicare, or Medicaid versus those with private insurance, but overall, patients with hEDS in the US report low satisfaction with healthcare, poor health-related quality of life, and significant barriers to care regardless of insurance type.
There is a need for research directly comparing outcomes by insurance type, as current studies do not stratify results by payer, leaving a gap in understanding how insurance status impacts care and outcomes for hEDS patients in the US.
A portion of people with hEDS may qualify for SSI/SSDI, which confers Medicaid or Medicare eligibility. However, many are denied disability because hEDS is hard to prove with objective tests, especially if the diagnosis is delayed or undocumented.
Patient-Level Strategies for Navigating Medical Care
Because of the systemic gaps in hEDS care, patients often must advocate for themselves across all healthcare settings. Effective self-advocacy strategies include
Organizing and documenting symptoms and medical history
Preparing detailed records before appointments
Communicating clearly and assertively about goals and concerns
Using patient portals and messaging tools for coordination
In Primary Care
Develop a consistent relationship with a supportive provider
Bring documentation and past test results to reduce redundancy
Participate in shared decision-making and care planning
In Specialty Clinics
Seek out providers with experience in hEDS, POTS, or MCAS
Request coordinated multidisciplinary care when possible
Advocate for referrals to physical therapy, occupational therapy, and mental health services
In Emergency Care
Carry a concise medical summary or emergency care letter. The Ehlers-Danlos Society has a general card or you can create your own personalized one.
Inform providers of common complications (e.g., joint dislocations, tissue fragility)
Use medical alert cards if available
Cross-Setting Strategies
Engage in self-management (e.g., pacing, pain tools, PT)
Join peer support groups for emotional and practical guidance
Use complementary therapies (e.g., yoga, massage) when helpful
Special Populations
Pediatric patients require parent-led advocacy and early intervention services
Transition to adult care should be planned and supported
LGBTQ+ patients benefit from inclusive providers and affirming environments
Racial and ethnic minorities may face greater barriers and benefit from culturally competent care and navigation support
Individuals with low health literacy or disabilities may need accessible materials, interpreters, and personalized support
Educating Your Provider About hEDS
A collaborative, open-minded provider is often more important than one with formal hEDS experience. Willingness to listen, learn, and coordinate care makes a tangible difference in how well patients manage this complex condition.
hEDS is under-taught in most medical training programs; many primary care providers (PCPs) have little exposure to its diagnostic criteria or multisystem nature.
Bringing brief, peer-reviewed materials can help bridge knowledge gaps, especially if done respectfully and selectively.
Recommended resources to share include
A one-page summary of the 2017 hEDS diagnostic criteria (e.g., from The Ehlers-Danlos Society)
A GeneReviews article or excerpt on hEDS
A short clinical summary on hEDS or associated conditions like POTS, MCAS, or chronic pain management in connective tissue disorders
Best practices when sharing information
Choose one or two concise, reputable documents
Frame the offer positively (e.g., “This helped me understand my condition better—thought it might be helpful to share”)
Avoid overwhelming your provider with large stacks of research or unsolicited advice
Use patient portals for follow-up if there’s not enough time during the visit
Benefits of sharing information include improved diagnostic accuracy, better care coordination, and more productive shared decision-making.
Be aware that responses may vary—some providers welcome educational materials, while others may become defensive or prefer to do their own research.
Summary
Hypermobile Ehlers-Danlos syndrome (hEDS) is a complex connective tissue disorder that lacks a dedicated medical specialty and remains under-recognized in most medical education. This results in widespread care delays, misdiagnoses, and poor coordination—especially given hEDS’s frequent comorbidities and multisystemic symptoms. Although a small number of multidisciplinary clinics offer targeted support, most patients must rely on self-directed strategies to navigate fragmented healthcare environments.
Research and expert consensus highlight the importance of patient-level strategies—such as documentation, symptom tracking, clear communication, and use of support networks—to improve care. These strategies are especially critical in the context of primary care, specialty referrals, and emergency care, where provider knowledge is often limited. Educating one’s own provider, when done respectfully and selectively, can improve diagnostic accuracy and promote collaborative care.
Outcomes are generally better when providers are open-minded, communicative, and willing to collaborate. Individuals who engage in self-management, join peer support communities, and advocate across systems tend to experience higher satisfaction, better coordination, and improved quality of life—even in the absence of ideal provider expertise. Targeted adaptations are necessary for pediatric patients, LGBTQ+ individuals, and those facing racial, linguistic, or socioeconomic barriers. Ultimately, improving hEDS care requires both systemic reform and empowered, well-supported patients.
