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The GoodHope EDS Clinic at UHN is a multi-disciplinary health care service to diagnose and treat patients with EDS.
There are 13 different types of EDS. Hypermobile EDS is by far the most common type and does not have a genetic mutation identified at this time. The other 12 types of EDS are much rarer and have a genetic mutation identified with them. Diagnosis of EDS requires a thorough assessment by an experienced practitioner. Genetic testing is only required for patients who meet the clinical criteria for one of the rarer types of EDS.
EDS is a multi-system disorder giving rise to multiple symptoms affecting health and quality of life to varying degrees. Presently, there is no cure.
The Spectrum of Hypermobility
Hypermobility is common in the general population (approximately 20%). Joint hypermobility can affect 1 to 2 joints (localized joint hypermobility) to multiple joints (generalized joint hypermobility). Hypermobility alone is not diagnostic for EDS. Many patients with hypermobility live lives free of pain and complications. For some patients, their generalized joint hypermobility (GJH) may cause chronic pain, joint dislocations and other complications (such as autonomic dysfunction and gastrointestinal complications) which may be diagnosed as Hypermobility Spectrum Disorder (HSD). Our clinic will use the very specific criteria that has been developed to asses and diagnose EDS when you are seen by our team members.
Collagen is a protein that provides flexibility and strength to the body tissues. Defective production or maturation of collagen in the body due to a gene defect causes Ehlers-Danlos Syndrome. The faulty gene can be inherited from the parent but can also occur for the first time in a person. This results in formation of abnormal or weak collagen that is unable to support the body organs and other tissues.
Do your joints bend beyond the normal range of motion? Do you find that you bruise more easily or have trouble healing from minor wounds? Do you experience frequent or chronic headaches and migraines? Learn more about the signs and symptoms of EDS.
The route to diagnosis may depend on several factors. The pathway begins with assessment of how mobile the joints are in comparison with the general population, identification of abnormal scarring and stretchy skin and recognition of other medical issues associated with EDS.
A brief set of questions that may help suspect the diagnosis of EDS are outlined as below:
Please bring copies of reports related to any genetic testing and associated consultations.
Initial assessments take approximately 1.5 to 2 hours. If follow-up appointments are scheduled, they usually take 45 minutes.
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what you can expect when you have a clinic appointment.
The first of its kind in Canada, the GoodHope Ehlers-Danlos Syndrome Clinic at Toronto General Hospital offers patients coordinated care from a wide spectrum of specialists, and is a single point of contact for those living with this illness. All donations to the Clinic, up to $1 million will be matched – doubling our reach and ensuring advocacy efforts, patient and caregiver education initiatives, and vital research is undertaken to meet the needs of this unique and often misunderstood patient population.
Donate to the GoodHope EDS Clinic
Individuals with symptomatic joint hypermobility and/or features of hEDS who do not meet the criteria incorporated in the new 2017 EDS nosology and present with specific secondary musculoskeletal manifestations are now labelled with the descriptive term of "hypermobility spectrum disorders". At present, hypermobility spectrum disorders are variable conditions "at bridge" between non-syndromic, asymptomatic joint hypermobility and the hypermobile EDS. Regardless, HSD and hEDS can be equal in severity, but more importantly, both need similar management, validation and care.
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An interdisciplinary team, located at Toronto General Hospital, consists of a core EDS team and a number of specialists who have a dedicated interest in diagnosis, interdisciplinary management and research to find a cure for EDS. The core EDS team members conduct assessments, make a treatment care plan and refer to clinical specialists when indicated.
Hance Clarke is the Director of Pain Services and the Pain Research Unit at the Toronto General Hospital. After his medical doctor (MD) and anesthesia subspecialty training in Toronto he received his PhD from the Institute of Medical Sciences at the University of Toronto and is a member of the Royal College Clinician Scientist Program. Dr. Clarke has subspecialty training in Hyperbaric Medicine and Interventional Chronic Pain Management. He is currently the Research Chair For the University of Toronto Centre For the Study of Pain. In 2016, Dr. Clarke was awarded a Career Award from the Canadian Pain Society. He has been recognized nationally and internationally for his research productivity and improvements to patient care such as the development of his novel Transitional Pain Program. His research interests include identifying novel acute pain treatments following major surgery, identifying the factors involved in the transition of acute postsurgical pain to chronic pain and identifying risk factors associated with continued opioid use and poor health related quality of life after major surgery. Over the past 5 years he has authored more than 60 peer reviewed manuscripts and aims to lead the Ehlers-Danlos program, as a Centre of Excellence, which will serve as an international hub for leading clinical and basic science discovery.
The goal of the GoodHope Ehlers-Danlos Syndrome (EDS) Clinic is to improve the clinical care options for patients and advance the knowledge of Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD). Very little is known about the relationship between exercise, diet and nutrition, and best practices of pain management in EDS. At present, there is no cure for this disease. Patient-led self-management is currently the best approach for the long-term treatment of both EDS and HSD (along with multidisciplinary specialist referral where required). In our clinical-research program, we are investigating the effect of multidisciplinary pain management approaches for joint pain and headaches, aerobic and resistance training for Postural Orthostatic Tachycardia Syndrome (POTS), and diet and nutrition for functional gastrointestinal (GI) disorders. We are also doing basic science research to advance a cure for EDS.
Our clinic offers multidisciplinary services for patients with EDS as follows:
Criteria for Neurosurgical Referral
Diagnostic Investigations Required to Support A Referral
Evaluation to support the referral should include:
Criteria for Neurosurgical Intervention
You will be contacted with information about your first appointment.
Please bring the following to your appointment. Not all of these items may be needed for your appointment. Our clinic or your referring doctor will let you know what you must bring.
Please arrive 15 minutes before your appointment.
When you arrive, you will sign in with the receptionist. You will need your health card (OHIP card) to sign-in. If you do not have an OHIP card, please bring another form of government-issued photo ID, such as a driver’s license or passport.
You may be given a Measuring Health Equity Questionnaire to fill out. This form contains questions about your background. We collect this information to find out who we serve and what unique needs you may have. The form is voluntary and you can choose ‘prefer not to answer’ to any or all questions. However, the information you choose to give us will help us improve the quality of care for you and others.
First appointments take longer than follow-up appointments. Your first appointment can take 2 hours or more. Follow-up appointments usually take 15 to 30 minutes. We do everything we can to stay on time but sometimes unforeseen circumstances may delay your appointment.
At the end of your first appointment, the nurse or doctor will give you a contact list for your health care team. If you don’t get a contact list, feel free to ask for it.
After every appointment, a member of your health care team will tell you about your next visit. Be sure you understand what is going to happen next. For example, know the time and place of your next visit or if someone will call you with this information.
If you are unsure about what your next steps are, don’t be afraid to ask a member of your team. We are here to help you.
We understand that reaching us by phone can sometimes be difficult. Often our phone lines are busy or are turned over to the message centre so our staff can prepare for clinic visits or help other patients. We make every effort to return your call within 24 hours. Our staff will try to reach you 2 times. If we are not able to reach you directly you may need to call us again.