EDS/HSD Clinical Perspectives

EDS/HSD Clinical Perspectives

May is Ehlers-Danlos Syndrome (EDS) awareness month, you can read an overview of EDS and its paired syndrome Hypermobility Spectrum Disorder here (insert link).  I am three months into a training program through the Ehlers Danlos Society’s ECHOs program. I have learned so much and feel humbled at what I was unaware of regarding the symptom pictures associated with these syndromes. It's more than bendy joints. 

You are seeing folks with these syndromes weekly in your practice and they often are not getting the care that they need and deserve. Increasing awareness around these syndromes in our field is particularly important to address the care gap. These folks do not receive the care they need when interfacing with the conventional medical system and so find their way into the holistic medical field. Without a more complete understanding of the syndromes and their variable presentations we run the risk of also not caring for them in the ways that they deserve.

Medicine, even natural or holistic medicine, is a field that despite what one might think, doesn’t reward unconventional and non-conforming viewpoints. When I began studying craniosacral therapy 25 years ago, I never would have imagined there would be a paradigmatic mainstream in the field but it appears that one has emerged. This fact contradicts my experience practicing, studying, reflecting on and teaching this work over the last 25 years.

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Introduction to Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) in Our Practices

Introduction to Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) in Our Practices

EDS and HSD are diseases affecting the connective tissues. They are thought to be genetic in origin. They are spectrum disorders and so symptom pictures are highly variable.

The Ehlers-Danlos Society offers this definition of EDS: The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders. The conditions are caused by genetic changes that affect connective tissue. Each type of EDS has its own set of features with distinct diagnostic criteria. Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility.

Hypermobility Spectrum Disorders can co-occur with EDS or present on their own. There is often overlap in symptoms between the two and differentiating between them can be challenging.

The Ehlers-Danlos Society offers this definition of HSD: Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. Other problems such as fatigue, headaches, GI problems, and autonomic dysfunction are often seen as part of HSD.

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