Description:

The hypermobile form of Ehlers-Danlos syndrome (hEDS) is the most common form of EDS. Individuals with hEDS have many health complications including chronic joint pain, postural orthostatic tachycardia, mast cell activation syndrome, and gastrointestinal concerns. The underlying genetic cause for hEDS remains unknown, and the diagnosis of this condition is based on clinical features. Due to the high prevalence of the condition, genetics departments receive an overwhelming number of referrals for individuals with hEDS. Because of this, many genetics departments have decided to no longer accept referrals for individuals with hEDS. However, patients with hEDS report that their family doctors are not educated in their complex needs and that they are not taken seriously by the healthcare system. As well, many individuals with hEDS are concerned that they may have a more severe form of EDS that is not being properly managed. In order to combat this gap in care, the Edmonton Medical Genetics Department is now providing an hEDS education webinar for patients to learn about their condition and the management that may be available to them. In this session, we would like to discuss our experiences in Edmonton and the feedback we have received on our hEDS webinar.

Objectives

At the end of the session, participants will be able to:

  • Describe the health and management needs for individuals with hEDS.
  • Examine alternative delivery methods for education and counselling of individuals with hEDS.
  • Describe the health and management needs for individuals with hEDS.

Target Audience: Clinical Geneticists, Genetic Counsellors
CanMEDS Roles: Health Advocate

Speaker: Taryn Athey

Event Timeslots (1)

PM Breakout Session 3
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KC 301 - Taryn Athey