OT and Ehlers-Danlos Syndrome

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.

1. You will be able to identify assessments OTs can utilize with EDS clients.

2. You will be able to recognize both traditional and emerging treatment approaches for EDS.

Intro and breakdown and analysis of journal article

• Intro

• Quick intro to Ehlers-Danlos and Hypermobility Spectrum Disorder

• Background on Behavior Change and Self-Management Programs

• What was the intent of this research?

• What were their results?

• Author discussion/conclusion

• Intro to Emily Rich

Discussion on practical implications for OTs

• What Emily wants you to know about living with EDS

• Emily’s current clinical work and research interests

• Article Impressions

• 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?

• What Emily sees as the future of EDS treatment

• Setting-up our clients for self-management at discharge

• Go-to resources that Emily recommends for education around EDS

• Technologies Emily foresees being helpful for OT better serve people with EDS

Primary

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

Additional

• 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).

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.

OT Potential pays guest speakers an honorarium for their participation, either directly or to an institution of the speaker's choosing at their request. We invite guests whose expertise often comes from practices, programs, or building products in their field. Where a speaker has a financial interest in the subject of a course, we disclose it below so you can weigh it for yourself.

OT Potential's interest in this topic: We have no financial stake in this topic.

Speaker interests: Emily Rich both has Ehlers-Danlos syndrome and treats clients with EDS and hypermobility spectrum disorders. She has no financial interest in this topic to disclose.