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FAQ - Why the Zebra?

What does the GoodHope EDS clinic do?

The GoodHope EDS clinic assesses patients for a diagnosis of Ehlers-Danlos Syndrome (EDS) or Generalized Hypermobility Spectrum Disorder (G-HSD).

We provide access to self-management resources (such as exercise rehabilitation, psychology, pain management, dietary support) for patients with a confirmed diagnosis of EDS/G-HSD.

We support primary care clinicians in managing the care of their patient with EDS/G-HSD. 

How are patients referred to the GoodHope EDS clinic?

Patients are referred by their primary care doctors for EDS assessment. Our assessment form can be found here. 

If you are interested in a referral, your primary clinician will need to complete a physical examination and arrange for you to have a 2D echocardiogram.   

Once the referral and 2D echocardiogram are complete, they can be faxed to 416-340-3792.

When to consider assessment for EDS? 

What happens after referral to the GoodHope EDS clinic?

Once your doctor refers you to the GoodHope EDS clinic, your referral will be reviewed and triaged to see if you meet referral criteria. If you meet criteria you will be put in the queue to be booked for your first appointment. The average wait time is about 12-18 months for your first appointment. 

It is importanat that you stay active and continue to work with your primary care practitioner while you await your assessment for EDS. You can find some ways to stay active here.

What happens during visits to the GoodHope EDS clinic?

For patients who receive a diagnosis of EDS or G-HSD, the clinic will work with you to set up a plan to help you learn to manage you symptoms.

There is no cure for EDS and therefore the goal of our clinic is to help patients learn to manage their symptoms effectively.

We may refer you to some of our self management programs or other associated medical practitioners depending on your symptoms and needs. We may make suggestions for your primary care clinician with regards to medications, imaging, or local referrals. 

You will continue to work closely with your primary care provider and specialists teams to manage your day-to-day care. The EDS clinic will remain available as a resource to provide EDS specific education and support as required. 

Can EDS be diagnosed virutally?

No, EDS/G-HSD cannot accurately be diagnosed virtually. 

A physical examination is required to make a diagnosis of EDS/G-HSD. To diagnose EDS/G-HSD a detailed, in-person physical assessment of your joint range of motion using specialized tool called a goniometer is required to confirm the presence of joint hypermobility. An in-person assessment of your skin, limb length and review of other physical manifestations is required to confirm or ruled out a diagnosis of EDS/G-HSD.

 

Physical examination also allows your practitioner to better understand what is causing your symptoms providing you with a more accurate assessment of your underlying medical diagnosis.  

I already have a diagnosis, why do I need to be reassessed?

Hypermobile EDS (hEDS) and generalized hypermobility spectrum disorders (G-HSD) are diagnosed clinically based on detailed physical examination and review of history. The criteria used to diagnose hEDS/G-HSD has changed and evolved over the years as more is understood about these diagnoses.

 

Your diagnosis may be based on more remote diagnostic criteria, may not have been confirmed by a specialist in this area, may have been diagnosed virtually or may not have used the correct tools to assess for an accurate level of joint hypermobility.

 

In order to make sure you are being treated for the correct diagnosis, we assess all patients to confirm a current diagnosis of EDS/G-HSD prior to receiving supports though our program.

Why the Zebra? 

Many individuals with EDS/HSD identify as Zebras. This is because no two Zebras have identical stripes, just like no two individuals with EDS/HSD are the same. Although patients may have similarities, every patient has different symptoms, comorbidities, experiences, and outcomes.   

 

Medical students are often taught the phrase “When you hear hoofbeats behind you think horses (common) and don’t expect to see zebras (uncommon).” This means that the common diagnosis should first be expected, not the uncommon diagnosis. 

The zebra became the symbol or EDS/HSD because those with Ehlers-Danlos syndrome and hypermobility spectrum disorder are the unexpected. “Sometimes when you hear hoofbeats, it really is a zebra.”

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