Your Pathway to an hEDS Diagnosis in Ottawa

A two-step appointment pathway to diagnosis for patients with suspected hypermobile Ehlers Danlos Syndrome (hEDS).

Getting an hEDS diagnosis in Ottawa can feel overwhelming, especially when you’re not sure where to start. This page lays out the diagnostic pathway for hypermobile Ehlers-Danlos Syndrome (hEDS) for patients across Ottawa and the surrounding area, step by step, so you know what an assessment involves and how to get started. As a private practice, we accept self-referrals, meaning you can book directly, without a referral from your family doctor. Whether you’re just beginning to explore your symptoms or you’re ready to seek answers, the goal here is to help you move forward with clarity and confidence.

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1. Your First Step: A Nurse-Led Assessment

Your first appointment in the EDS & Hypermobility Pathway is a comprehensive, nurse-led assessment with our Registered Practical Nurse. This visit builds a complete clinical picture of your symptoms and history before your diagnostic appointment with the Nurse Practitioner, so nothing gets missed and your evaluation is as thorough as possible.

Our assessing nurse brings lived experience with hypermobile Ehlers-Danlos Syndrome (hEDS). She understands the pathway not only as a clinician, but as someone who has navigated the symptoms, the uncertainty, and the search for answers herself. From your very first visit, you can expect to be heard, believed, and met with genuine understanding.

$400

2. Your Diagnostic Appointment: Formal Assessment and Next Steps

This is your second appointment in the EDS & Hypermobility Pathway, conducted virtually by our Nurse Practitioner. Building on the findings from your Part 1 assessment, this visit provides your formal diagnostic evaluation, all from the comfort of your own home.

During your appointment, the Nurse Practitioner reviews your previous assessment results, completes an in-depth clinical evaluation, and applies the 2017 International Classification Criteria for hEDS and hypermobility spectrum disorders. You’ll leave with a formal diagnostic impression, a personalized management plan, and specialist referrals where indicated, so you have clear direction on what comes next.

$785

The Beighton Score

The Beighton score is a quick nine-point exam used to screen for generalized joint hypermobility. It checks five movements on both sides of the body: bending the pinky back past 90°, the thumb to the forearm, hyperextending the elbows and knees, and placing the palms flat on the floor with straight knees. A positive result is generally 5+/9 in adults, 6+/9 in children before puberty, and 4+/9 in adults over 50, with the bar dropping at older ages to account for natural stiffening.

Big changes are expected in 2026. As part of the “Road to 2026” revision of the EDS and HSD criteria, the Beighton score is under review for being too narrow. Critics point out that its scored joints are mostly in the upper limb, leaving out many major joints, and it doesn’t capture hypermobility lost to age, surgery, or exercise. Researchers are now testing an expanded version that adds shoulder, forearm, ankle, and big-toe assessments to the existing maneuvers.

The wider update may also fold in newly discovered genes, blur the line between hEDS and HSD toward a spectrum model, and potentially split hypermobile EDS into new subtypes. Nothing is final until the committee publishes, and remember, a Beighton score alone has never been enough to diagnose hEDS on its own.

About The Ottawa EDS Diagnostic Pathway

About the Ottawa EDS Network

The Ottawa EDS Network was founded by Cara, nurse and owner of Thrive Wellness & Aesthetics, as a deeply personal passion project. After more than a decade of searching for answers within the very healthcare system she worked in, she was finally diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS).

That long road of uncertainty, chronic pain, misdiagnosis, and frustration is exactly why this pathway exists. As Cara connected with others facing the same struggles, and as her practice drew a growing number of patients with EDS and related conditions, one truth became clear: too many people lose years simply trying to figure out where to start.

Why This Pathway Exists

The EDS Diagnostic Pathway is our answer to that problem. It’s a clear, step-by-step guide designed to help you understand the signs of EDS and related conditions, recognize what a thorough assessment should involve, and navigate the road toward diagnosis and care with confidence. Our goal is to shorten the journey we know all too well, and to make sure no one has to walk it alone.

This is a project from the heart, built by someone with EDS, for others walking the same path.

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos syndromes (EDS) are a group of inherited connective tissue disorders that affect collagen, the protein that gives structure to skin, joints, and blood vessels.

Hypermobile EDS (hEDS) is the most common subtype. Its hallmark features are joints that move beyond the normal range, joint instability, and chronic pain. Many people also experience soft or stretchy skin, easy bruising, fatigue, and systemic symptoms like digestive issues, dizziness, or a racing heart on standing.

There is currently no identified genetic marker for hEDS, so diagnosis is made clinically by assessing hypermobility, symptoms, and family history. The Ehlers-Danlos Society is leading a “Road to 2026” initiative to update the diagnostic criteria, so the way hEDS is defined and diagnosed is expected to change.

a note from your providers

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Cara is a Registered Practical Nurse (RPN) in Ottawa, the founder of Thrive Wellness & Aesthetics, and someone who received her own hEDS diagnosis in 2024 after many years of searching for answers. She built the Ottawa EDS Network because she lived the diagnostic gap herself, and because she believes no one should have to fight as hard as most EDS patients do just to be seen.

Together with Melissa Schuurman, NP, Thrive Wellness & Aesthetics offers an integrated navigation and diagnostic pathway for people with suspected hypermobile EDS and related connective tissue conditions. Based in Manotick and serving patients across Ottawa, Kemptville, and the surrounding area, the practice pairs nurse-led intake and assessment, led by Cara, with formal diagnosis, led by Melissa. Between the two of them, each patient’s story stays seen, and no one’s history gets lost along the way.

- Thrive Nursing Team

Resources for EDS Patients

Living with EDS and related conditions is easier with the right information and support behind you. Below you’ll find a collection of trusted resources, from patient organizations and educational materials to local supports, to help you learn more, connect with others who understand, and feel more confident navigating your care. Whether you’re newly diagnosed or still searching for answers, these tools are here to support you at every stage of your journey.