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 Providing information that fits the needs of our patients

Learn more about different strategies for managing EDS and G-HSD

Learning Resources

Online Learning Module Designed for Our Patients

The GoodHope Ehlers-Danlos Syndrome Clinic has developed a specialized learning module to better prepare our patients for treatment at the clinic.​

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The aim of this module is to provide information on EDS, G-HSD, services at the clinic, expectations for care, and self-management approaches. If you have EDS or are supporting someone with EDS, we hope this resource will be a helpful companion to their treatment. ​​

To access our interactive learning module, please click on the title below:

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General recommendations 

Physical activity
 

It is very important to keep moving!

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  • Daily exercise (up to 30 minutes of low impact physical activity 3-5 days per week)

  • Avoid contact sports, especially in cases of know joint instability

  • Recommended activities include Pilates, swimming/water aerobics, and recumbent biking

  • Focus on improving strength, proprioception and general conditioning.

  • Consider referral to Physiatry for detailed musculoskeletal assessment in patients with multiple musculoskeletal related concerns

Pain Management 

  • Learn about and understand the mechanisms of chronic pain

  • Over the counter pain medications as tolerated (avoid daily use of NSAIDS)

  • Daily exercise

  • Mental health support with referral to psychiatry or psychology as required

  • Bracing as required (used only as needed in addition to strengthening exercises) to support unstable joints

  • Referral to comprehensive, multidisciplinary pain management specialists as required (for example, TAPMI in Toronto)

  • For chronic headaches/migraines consider using www.mychronicmigraine.ca to find a local headache specialist

  • The Arthritis Society has resources for patients with hypermobility which may include limited physiotherapy and occupational therapy support

Psychology 

  • Addressing the psychological aspects of illness can change how the illness is experienced 

  • Psychology can help you manage your symptoms and pain through

    • ​Mindfulness

    • Cognitive behavioural therapy

    • Dialectical behavioural therapy

    • Acceptance and commitment therapy

    • Clinical hypnosis​​​​

  • Seek support in your community through your primary care teams, psychologists, social workers, counsellors, online supports (for example Mindbeacon), family and peers

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Nutrition 

  • Every patient is different, but some EDS/G-HSD patients find benefit from low histamine, low FODMAP, gluten or lactose-free diets

  • Increase salt and fluid intake for those with orthostatic/postural symptoms (discuss with your primary care practitioner before making any dietary changes)

  • Consider dietitian referral for assistance in identifying food triggers and developing appropriate dietary plans

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