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 assessment takes place in two parts:
PART 1: Virtual Appointment
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MS teams appointment arranged by EDS administrative team - you will need access to a computer, smart phone or tablet for this.
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Appointment will take 30-90 minutes.
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You will be asked to complete a patient information sheet prior to the appointment to obtain some basic information about health.
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Your EDS clinician will ask you about your past medical history, medical diagnoses and symptoms, your family history and your social history.
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Your EDS clinician will provide you with some basic information about EDS and inform you of wait times for the next stage of your assessment.
How to prepare for your virtual appointment:
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Think about when your symptoms started.
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Think about symptoms that affect each of your body systems (musculoskeletal, gastrointestinal, cardiac, dental, urinary, respiratory, mental health, neurology etc.).
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Sometimes making notes for yourself ahead of time can help.
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Talk to your family members to learn the medical history of 1st degree relatives (if possible).
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Feel free to ask a family member or friend to attend the appointment with you if needed.
PART 2: In-Person Appointment
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An in-person appointment will be booked by our administrative staff a number of months after your virtual assessment.
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You will be asked to fill in a number of questionnaires through the Manage My Pain portal prior to the appointment.
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Appointment will take place at Toronto General Hospital.
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Appointment will take 30-90 minutes, you will be asked to change into a hospital gown for the examation.
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You may be assessed by a physician, physician assistant, nurse practitioner or training doctor with input from an EDS physician.
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The physical exam will take around 15 minutes. The exam will assess:
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The Beighton score using a digital goniometer to confirm joint range of motion
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How other joints in your body move
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How soft and stretchy your skin is
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How your skin heals (looking at scars etc.)
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Measuring your heart rate and blood pressure
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After the examination 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.
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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.
How to prepare for your in-person assessment
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Complete all required questionnaires prior to the appointment (will be sent to you by administrative team).
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Think of any major changes to your health that occurred between the virtual appointment and in person appointment so you can update your EDS practitioner.
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Ensure that you are able to take part in the physical examination without major limitations (i.e if you have just had surgery or an acute injury that effects your mobility please let the team know prior to booking).
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Expect that wait times between virtual appointment and in person appointment may be up to 18 months.
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Prepare a list of questions you might have for your practitioner that might be relevant if you do or do not receive and EDS/G-HSD diagnosis.
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You are welcome to bring a support person with you.
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.
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 eds.managinglife.com 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: