Unfortunately, research on the lived-experience for those with Ehlers-Danlos Syndrome shows us that we as a profession need to be doing a better job.

People with Ehlers-Danlos Syndrome report:

• A lack of reliable information for themselves
• Social stigma from peers.
• Lack of awareness of EDS in the healthcare community

As occupational therapy professionals, there is much we can contribute to supporting this population. And, today we’ll look at a self-management program that is grounded in behavior change theory and we co-designed with people with lived experience of EDS.

Next week we will welcome to the podcast, an occupational therapist who has EDS and also treats EDS clients in her clinical practice, Emily Rich, PhD, OTR/L. Emily and I will discuss self-management, along with assessment and treatment of EDS.

You can find more details on this course here:
https://otpotential.com/ceu-podcast-courses/ot-and-ehlers-danlos-syndrome

Here's the primary research we are discussing:
Developing a self-management intervention to manage hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS): an analysis informed by behaviour change theory.

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