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Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder: What You Should Know

  • rainahawthorne
  • May 9
  • 3 min read
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Written by Raina Hawthorne

Registered Physiotherapist


Ehlers-Danlos Syndrome (EDS) is a genetic condition that affects collagen tissue throughout the body. This can lead to hypermobile, sometimes unstable joints, skin that may be stretchier than typical, and tissues that are more prone to injury. There are several subtypes of EDS, with Hypermobile Ehlers-Danlos Syndrome (hEDS) being the most common.


When an individual presents with similar symptoms but doesn’t meet the full diagnostic criteria for hEDS, they may be diagnosed with Hypermobility Spectrum Disorder (HSD).


It’s important to know that a diagnosis of EDS or HSD does not determine the severity of symptoms or how significantly someone’s life is impacted. What truly matters is a person-centered approach to care—treatment and support should always be based on individual needs, not just diagnostic labels.


Common Co-existing Conditions

People with EDS or HSD often live with other conditions. These commonly include:

  • POTS (Postural Orthostatic Tachycardia Syndrome) and other forms of dysautonomia (dysfunction of the autonomic nervous system)

  • MCAS (Mast Cell Activation Syndrome) or issues with the allergy/histamine system

  • Digestive issues such as slow motility, constipation, and IBS

  • Urogenital concerns like bladder urgency or pelvic organ prolapse

  • Mental health challenges including anxiety and depression, often influenced by chronic pain and feeling misunderstood or dismissed

  • Neurological symptoms like migraines, balance issues, coordination difficulties, and sensory disturbances


But Isn’t Flexibility a Good Thing?

This is a common misconception. While some people with EDS or HSD are very flexible, others may actually become stiff and lose mobility over time. Why? Because their muscles may be working overtime to stabilize joints that move too much. This guarding and other tissue changes can lead to pain and tightness, creating a very different picture than the stereotypical “bendy” presentation.


How Is EDS/HSD Diagnosed?

Diagnosis often starts with a physical assessment. Tools like the Beighton Score help screen for joint hypermobility, and clinical criteria are used to determine whether someone meets the standards for hEDS or HSD. While hEDS currently lacks a known genetic marker, other EDS subtypes can be identified through genetic testing and typically require referral to a geneticist. Any physician familiar with the criteria can perform an initial assessment for hEDS.


How Can Physiotherapy Help?

Physiotherapy is a key part of managing EDS and HSD—but it’s essential to work with a physiotherapist who understands the condition. Treatment may focus on pain management, improving mobility, navigating daily tasks more easily, or supporting recreational and athletic activities. A well-trained physiotherapist can also offer guidance on managing co-existing conditions, providing education, and collaborating with other healthcare providers.


What Can I Do at Home?

Here are a few foundational strategies that many people with EDS or HSD find helpful:

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Strengthening and Stabilization Exercises

Focus on improving postural control and joint stability. While this is best done with a trained physiotherapist, resources like the Muldowny Protocol are helpful for independent work—and even more effective when used together with professional guidance.

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Pacing and Energy Management

Tune into your energy levels each day and respect your limits. Break tasks into manageable steps, allow for rest periods, and resist the urge to push through fatigue. This helps avoid the “boom-bust” cycle that many with EDS/HSD experience.

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Learn About Co-Existing Conditions

Your symptoms may be influenced by overlapping health issues. The more you understand these connections, the better you can advocate for the right care. Check out the links below and on our resource page to learn more.



It Feels Like a Lot but...


Living with EDS or HSD can be complex and, at times, overwhelming—but you’re not alone, and there is support available.


Understanding that hypermobility affects more than just flexibility helps shift the focus toward supporting the whole person. With the right knowledge, collaborative care, and a few key self-management strategies, people with EDS/HSD can navigate their challenges and improve their quality of life in meaningful ways.


Links to Learn More

Centered In Health Resource Page: https://www.centeredinhealth.ca/patient-education

Ehler's Danlos Syndrome Society Website: https://www.ehlers-danlos.com/

 
 
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