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Ehlers-Danlos Syndrome (EDS) care is essential for managing this rare and complex genetic condition that affects the connective tissues in your body. This means it can impact everything from your joints and skin to your blood vessels, gut, and more. If you have EDS, you might experience overly flexible (hypermobile) joints, skin that bruises or tears easily, chronic pain, and even issues with digestion or circulation.
Since there’s no cure for EDS, the focus is on managing EDS symptoms and improving your quality of life. But since EDS affects so many different parts of the body – and because everyone experiences it differently – you need more than just one specialist. A multidisciplinary team is essential to help you navigate the condition and get the best possible care [1].
Are you Hypermobile, or think you may have HSD or hEDS?
Take our 15-min evidence-based online test to find out if you might benefit from professional support.
Why a multidisciplinary collaborative team approach is necessary for Ehlers-Danlos Syndrome (EDS) care
EDS affects your whole body, not just one part. It can impact your skin, joints, blood vessels, bladder, nerves, heart, gut, and more, meaning no two people experience it the same way. Some of you might struggle more with joint pain and dislocations, while others deal with gut issues, fatigue, or circulation problems. Because EDS looks so different for everyone, there’s no one-size-fits-all approach to care. That’s why having a team of specialists who understand EDS and Hypermobility is so important. By working together, doctors, physios, occupational therapists, and other health professionals can create a care plan that’s tailored to your unique needs [2]. It’s all about managing symptoms, improving your quality of life, and making sure you get the right support at the right time.
To receive proper care for Ehlers-Danlos Syndrome (EDS), you need a comprehensive, holistic, proactive, collaborative team approach and care plan that meets your unique needs and priorities.
The goal of a multidisciplinary team is to address all aspects of the condition, prevent further complications, and enhance the overall well-being of the patient. Here’s how different specialists contribute to the ongoing management and care of individuals with EDS (this list is by no means exhaustive):
1. General Practitioners (GPs) and EDS-Specialising Doctors
2. Physiotherapists
3. Psychologists
4. Rheumatologists
5. Cardiologists
6. Gastroenterologists
7. Exercise Physiologists
8. Pain Management Specialists
9. Occupational Therapists (OTs)
10. Prolotherapy and Rehabilitation Physicians
11. Speech Therapists
12. Geneticists
A holistic, proactive, and comprehensive approach
The complexity of EDS, with its range of symptoms and impacts on various systems, necessitates a holistic, proactive, and comprehensive approach to care. No single specialist can address all the challenges that come with EDS, which is why a multidisciplinary team is so important. Each specialist brings valuable expertise to the table, ensuring that all aspects of the condition are managed effectively. This collaborative approach not only improves symptom management but also enhances the overall quality of life for individuals living with EDS.
Are you Hypermobile, or think you may have HSD or hEDS?
Take our 15-min evidence-based online test to find out if you might benefit from professional support.
References
[1] Tinkle, B. T., & Levy, H. P. (2017). Ehlers-Danlos syndrome: Multidisciplinary approach to diagnosis and management. American Journal of Medical Genetics, 173(3), 791-798. https://doi.org/10.1002/ajmg.a.38145
[2] The Ehlers-Danlos Society. (n.d.). Why a multidisciplinary approach is necessary for EDS. Retrieved February 02, 2025, from https://www.ehlers-danlos.com/
