Ehlers-Danlos Syndrome (EDS) is often recognized by its hallmark feature – joint hypermobility. Yet, the reality of EDS is far more complex, extending beyond just being “bendy.” The underlying collagen synthesis abnormalities in EDS can trigger a cascade of related health issues, from skin hyperelasticity and fragile ligaments to complications affecting blood vessels and the heart. For many, understanding and managing these diverse symptoms can feel like navigating a maze.
Early and accurate identification of EDS is crucial. It’s the essential first step towards optimizing patient outcomes and improving quality of life. Ehlers-Danlos Syndrome encompasses a group of 13 distinct genetic connective-tissue disorders, collectively affecting an estimated 1 in 20,000 individuals. Beyond joint hypermobility, EDS can manifest in a wide array of symptoms, including frequent dislocations, exceptionally stretchy and thin skin, easy bruising and abnormal scarring, persistent joint and muscle pain, overwhelming fatigue, and cognitive difficulties often described as “brain fog.” In more severe cases, EDS can lead to serious complications such as dysautonomia and even stroke.
While genetics clearly play a role, with hypermobility often observed across family members, genetic testing panels only identify known mutations in approximately 20% of patients. The majority, around 80%, are diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) based on established clinical criteria. This diagnosis often relies on assessments like the Beighton score, a screening test specifically designed to evaluate joint hypermobility.
Once diagnosed, the critical next step is connecting individuals with healthcare professionals who possess in-depth knowledge and experience with EDS. This includes rheumatologists and other specialists who can guide patients through the complexities of EDS and help them effectively manage the associated challenges. Recognizing this vital need, Cleveland Clinic established a dedicated care program in 2019, designed to serve as a medical home for EDS patients.
A Medical Home for EDS Patients: Cleveland Clinic’s Coordinated Approach
The Cleveland Clinic Eds Coordinated Care Program was launched with a clear mission: to provide patients with a centralized point of care where they can receive comprehensive assessment, in-depth education about Ehlers-Danlos Syndrome, and seamless referrals to physical therapy and other necessary services. This program takes a holistic approach, understanding that EDS impacts multiple body systems and requires a multidisciplinary team. The program actively coordinates with various departments within Cleveland Clinic, including orthopaedic surgery, cardiology, physical therapy, gastroenterology, neurology, and vascular medicine. This ensures that patients can efficiently access specialists who not only understand the intricacies of EDS but also have expertise in addressing the specific conditions that often accompany these syndromes.
Benefits of Coordinated Care at Cleveland Clinic
Since its inception, the Cleveland Clinic EDS program has been instrumental in helping hundreds of patients receive the integrated and coordinated care essential for managing their chronic condition. The program offers a range of services designed to address the diverse needs of EDS patients:
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Comprehensive, Coordinated Care Network: Patients benefit from a well-established network of providers across various specialties who are experienced in addressing the multifaceted issues arising from hypermobility and EDS. This integrated approach ensures all aspects of a patient’s health are considered and managed collaboratively.
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Vascular Medicine Expertise: For patients experiencing vascular complications, such as aneurysms or dissections, the program provides direct access to vascular medicine specialists. These experts are crucial in managing the specific risks EDS poses to blood vessels.
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Orthopaedic Solutions: Patients dealing with frequent dislocations or other orthopaedic issues related to EDS have streamlined access to orthopaedic specialists. These surgeons and physicians understand the unique challenges of EDS and can provide tailored treatment plans.
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Pain Psychology and Chronic Pain Management: Recognizing the significant impact of chronic pain and fatigue on EDS patients, the program integrates pain psychology experts. These specialists offer strategies and therapies to help patients manage chronic pain, improve coping mechanisms, and address the psychological aspects of living with a chronic condition.
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Cardiology and Neurology Support for Dysautonomia: For patients experiencing dysautonomia, a common comorbidity in EDS, the program facilitates access to both cardiology and neurology specialists. This collaborative approach is vital in diagnosing and managing the complex symptoms of dysautonomia, such as irregular heart rate, blood pressure fluctuations, and dizziness.
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Specialized Physical Therapy: Physical therapists within the program possess specialized knowledge in movement and pacing strategies tailored for patients with hypermobility. They understand the nuances of EDS and can develop customized exercise plans that improve strength, stability, and function without exacerbating symptoms.
Empowering Patients Through Understanding and Validation
One of the most significant advantages of the Cleveland Clinic EDS program lies in its ability to connect the dots between seemingly disparate symptoms. By understanding the complex nature of Ehlers-Danlos Syndrome, the program prevents patients from feeling lost in a fragmented healthcare system, bouncing between specialists without a clear path forward. This coordinated approach ensures that patients receive comprehensive care from a team that understands the interconnectedness of their symptoms.
Beyond addressing the physical manifestations of EDS, the program emphasizes the importance of acknowledging and managing the social and psychological impacts of living with a chronic, often misunderstood condition. Living with EDS can be isolating, and the program aims to create a supportive and validating environment.
In line with this commitment to patient empowerment, Cleveland Clinic is introducing shared medical appointments (SMAs). These group appointments will provide an efficient and effective platform for educating newly diagnosed patients about EDS. SMAs also offer a valuable opportunity for patients to connect with others who share similar experiences, fostering a sense of community and mutual support.
For many individuals who come to the Cleveland Clinic EDS program, it’s a turning point in their healthcare journey. Some have endured a range of complications related to EDS for years, often without a proper diagnosis or receiving care from clinicians unfamiliar with the syndrome. Being truly heard and understood by healthcare professionals who recognize the complexities of EDS brings immediate relief and validation.
Perhaps most importantly, the Cleveland Clinic EDS Coordinated Care Program offers patients reassurance that their experiences are valid and not simply “in their head.” Many EDS patients have been dismissed or told that “nothing is wrong” by previous healthcare providers. The program provides crucial validation, offers tangible tools for managing symptoms, and instills hope that feeling better and improving quality of life is achievable.
The Cleveland Clinic’s Ehlers-Danlos program has been developed with funding support from the family of the late Sophie Herschman, who received care for her EDS at Cleveland Clinic. Click here to learn more about her and the gift that grew out of her EDS experience.
