OT and Ehlers-Danlos Syndrome

Earn 1 hour of continuing education by joining OT Potential after taking this course.

Scheduled to be released on October 10, 2024.

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.

Primary Journal Article Explored

When you log in, be sure to check out the OT Potential Club’s written breakdown of the following research article. Then, share your questions and thoughts with fellow practitioners.

• Developing a self-management intervention to manage hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS): an analysis informed by behaviour change theory.

Supporting Research and Journal Articles

• Immediate and 6-week after effects of a rehabilitation program for Ehlers–Danlos syndrome hypermobile type patients: A retrospective study.
• Occupational Therapy Interventions for Clients with Ehlers-Danlos Syndrome (EDS) in the Presence of Postural Orthostatic Tachycardia Syndrome (POTS).

Learning Objectives

• You will be able to identify assessments OTs can utilize with EDS clients.
• You will be able to recognize both traditional and emerging treatment approaches for EDS.

Agenda

Intro (5 minutes)

Breakdown and analysis of journal article (5 minutes)

• Intro to Ehlers-Danlos and Hypermobility Spectrum Disorder
• Background on Behavior Change and Self-Management Programs
• What was the intent of this article?
• What were their results?
• What did they conclude/discuss?

Discussion on practical implications for OTs (50 minutes)

• As someone with EDS, what do you want fellow OT professionals to know about living with the condition? 
• Can you tell us about your current clinical work and research interests?
• What stood out to you from this article? 
• When you are evaluating someone with EDS, what assessments do you typically use? 
• What are some typical OT goals for someone with EDS? 
• What have you seen as some of the standard approaches for OT treatment? 
• Where do you feel like we need to go in the future of OT treatment? 
• How could we as OTs better set-up our clients for self-management at discharge? 
• Do you have go-to resources that you recommend for education around EDS? 
• We’ve been discussing AI tools quite a bit on the podcast this year. Are there any technologies you can foresee being helpful for OT better serve people with EDS? 

Target Audience/Educational Level

Our target audience is occupational therapy practitioners who are looking to learn about OT and Ehlers Danlos Syndrome.  The educational level is introductory.

Financial and Non-financial Disclosures

It is the policy of OT Potential to disclose any financial and non-financial interest the provider or instructor may have in a product or service mentioned during an activity. This is to ensure that the audience is made aware of any bias of the speaker.

We here at OT Potential have no financial stake in this topic. 

Speakers

Emily Rich, PhD, OTR/L

Emily Rich, PhD, OTR/L is a researcher and clinical specialist in postural orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos syndromes (EDS)/ joint hypermobility. Emily’s research centers around POTS and rehabilitation therapy, specifically exploring self-management and group-based treatment options. As a clinician, Emily specializes in treating individuals with chronic conditions including forms of dysautonomia such as postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndromes and joint hypermobility, persistent pain, and Parkinson disease. She places a high value on patient-partnered, evidenced-based treatment.   

Sarah Lyon, OTR/L

Sarah’s passion is helping fellow OT practitioners translate evidence into daily practice. Sarah earned her BA in religion from St. Olaf College, then earned her master’s degree in occupational therapy from New York University in 2011.

Since then, she’s worked in numerous facilities, including a critical access hospital, an acute trauma hospital, and a state inpatient psychiatric hospital. Sarah is the founder/owner of OT Potential. Read more about OT Potential here.

This course was designed to meet your continuing education requirements

We designed the courses in the Club to meet the requirements for “online” and “independent/self-study” courses. To verify the requirements from your specific state (within the US), check out our post, OT Continuing Education Requirements. If you are outside of the United States and have questions, please contact us.

We are proud to be an AOTA Approved Provider and to meet the requirements for your NBCOT renewal.

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