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Welcome to the GoodHope Ehlers-Danlos Syndrome Clinic 

The information on this page will help you prepare for your first visit to the clinic

Before Your First Visit

Filling out Intake Questionnaires from Home

Prior to the first visit, we ask patients to fill out our intake questionnaires. The clinic administrator will contact each patient to provide them with more information.


Intake questionnaires are administered by our online Manage My Pain portal which patients can use to fill out the questionnaires from the comfort of their home.

After speaking with the clinic administrator, patients can go to to register for Manage My Pain and access all of the intake questionnaires directly.

Patients have the option of tracking their pain on the Manage My Pain portal to help them better understand and manage their pain.

Find out more about Manage My Pain in this short video:

Patients referred to the GoodHope EDS clinic can expect a one on one consult with an expert EDS practitioner to identify whether or not they have a diagnosis of Ehlers-Danlos Syndrome EDS) or generalized hypermobility spectrum disorders (G-HSD) 

The diagnosis will occur after a detailed 2 part assessment:

Part 1: Virtual appointment where your EDS practitioner will review in detail your past medical history, family history, and symptoms


Part 2: In-person assessment where you practitioner will complete a detailed physical examination to look for features that are suggestive of a diagnosis of EDS/G-HSD. This will include:

  • Looking at how your joints move 

  • Feeling and measuring your skin 

  • Measuring your heart rate and blood pressure 

  • In some cases may involve a blood test 


At Part 2 your practitioner will review the results of your medical history and physical examination and will let you know if you whether or not you have a diagnosis of EDS/G-HSD


Genetic testing is not required to diagnose hypermobile EDS or G-HSD. Genetic testing will only be offered if an individual meets the minimum clinical criteria for a genetically identifiable form of EDS.  

If you do receive a diagnosis of EDS/G-HSD, your practitioner will provide you with education on these diagnosis and may send some referrals to help you manage your symptoms.

If you do not receive a diagnosis of EDS/G-HSD you will be discharged back to the care of primary care teams/referring doctor.

Patient Self-Management Program

Patients diagnosed with EDS/G-HSD may be referred to our self management program for ongoing support in managing their EDS/G-HSD symptoms. 

GEAR program: (GoodHope Exercise and Rehabilitation Program): You may be referred to our physiotherapist or kinesiologist who will work with you to build an exercise program for individuals with joint hypermobility 

Psychology: You may be referred to our psychologist where you may have one-on-one sessions and/or have the opportunity to take part in group sessions focusing on managing your mental health and chronic pain.


Pain management: You may be referred to our pain physicians who will work with you and your primary care provider over a preset number of visits to find medications and/or alternative measures to manage your pain. 


Social work: You may be referred to our social worker who can help answer questions regarding work/school accommodations and finding social service supports in the community. 


Dietitian: You may be referred to our dietitian who will help you look at your diet and how it may be impacting your symptoms (i.e. identifying and removing food triggers). 


Gastroenterology: If you have gut motility issues you may be referred to our GI consultation service for assessment.

You may be approached by members of our research team to discuss ongoing research in the EDS program. The choice to take part in clinical research is yours and will not change the outcome of your care in the program. You may ask your medical and/or research team any questions you have about research within the EDS program.

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