ALERT CONTENT PLACEHOLDER

Location

Contact

Hours

Location

Contact

Hours

Location

Contact

Hours

Location

Contact

Hours

Referrals

 What We Do

The GoodHope EDS Clinic at UHN is a multi-disciplinary health care service to diagnose and treat patients with EDS.

What is Ehlers-Danlos Syndrome?

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 h​ypermobility (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.

​​​What Causes Ehlers-Danlos Syndrome?

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.

​Signs & Symptoms​​​

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.

Diagnosis & treatment

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:

  1. Do you have unusual symptoms related to joints and tissues and a lot of trouble with hypermobile joints, tendons, ligaments and muscles?
  2. Do you suffer from easy bruising with trivial trauma and have multiple large bruises at any given time?
  3. Do you have a chronic functional gut disorder or malabsorption that has been diagnosed as Irritable Bowel Syndrome?
  4. Do you have asthma/eczema/hay fever/rhinitis, multiple food/drug/other allergies or intolerances, itching or urticaria, or more than one autoimmune condition?
  5. Do you experience dizziness and headache symptoms when standing that are usually resolved by lying down?
  6. Do you feel exhausted a lot of the time or feel ​that you can’t seem to think as clearly as normal?
If you answer yes to the first question and yes to some of the other symptoms as outlined in the questions above, please consult with your primary care​ physician to assess for generalized joint hypermobility. If you are found to have generalized joint hypermobility, your physician can make a referral to the EDS Clinic.

How to Prepare

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.

Learn more about what you can expect when you have a clinic appointment.

Donate Now

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

Hypermobility Spectrum Disorders

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.

 Materials and Resources to Help You

​Visit our Health Information section and find dedicated resources to help you understand your condition. F​ind the information​ you're looking for.​​​​​

 Meet Our Team

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.​

​​

Medical Director

Dr. Hance Clarke  
Hance Clarke​

​​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 traini​ng 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.

EDS Core Team

Dr. Nimish Mittal  
Nimish Mittal, Medical Lead​
Dr. Nimish Mittal is the Medical Lead of the Ehlers-Danlos Syndrome Program. He is a physiatrist at the University of Toronto with subspecialty fellowship training in chronic pain management. His expertise involves management of complex connective tissue disorders and comprehensive multimodal pain management including USG and fluoroscopy guided interventions. He is a committee member of the Pain Working Group of the International Consortium of the Ehlers-​Danlos Syndrome and the newsletter liaison of the regenerative pain medicine special interest group of the American Society of Regional Anesthesia and Pain Medicine. He is also pursuing a Master of Science in Health Research Methodology at McMaster University.​​

Dr. Maxim Rachinsky  
Maxim Rachinsky, Physician
Following graduation from the University of Toronto Family Medicine Residency Program, Dr. Maxim Rachinsky completed a Fellowship in Chronic Pain Management and connective tissue disorder at Toronto General Hospital. As a family physician in the GoodHope Ehlers-Danlos Syndrome Clinic, his current roles include initial patient assessment and follow-up, as well as advice and strategies on pain management.

Laura McGillis ​
Laura McGillis, Nurse Practitioner
Laura is a Nurse Practitioner in the Ehlers-Danlos Syndrome program. She completed her undergraduate degree in Nursing Science at Queen’s University in 2005 and Graduate degree in Masters of Nursing with Adult Nurse Practitioner specialty from University of Toronto in 2012. She has a clinical appointment with the University of Toronto as an adjunct lecturer. She has practiced in her professional career in Canada, New Zealand and Australia. She has a varied background including respirology, general ​medicine, malignant hematology and EDS.

 ​
Oksana Rogatchuk, Administrative Assistant
Oksana Rogatchuk spent 5 years with ParaMed Home Health Care and has spent the last 2 years working with various clinics at Toronto General Hospital, including the Thrombosis Clinic, Red Blood Cell Disorder Clinic, Hematology, Liver Clinic, Medical Day Unit and ENT Clinic.

Photo of Daniel Santa Mina 
Daniel Santa Mina, Exercise Physiologist
Dr. Daniel Santa Mina is an Assistant Professor at the University of Toronto in the Faculty of Kinesiology and Physical Education and the Faculty of Medicine in the Department of Surgery. Dr. Santa Mina is also a Scientist in the Cancer Rehabilitation and Survivorship Program at the Princess Margaret Cancer Centre where he leads an exercise-oncology research program. Dr. Santa Mina’s main areas of clinical research foci are on the physiological, functional, and psychosocial effects of exercise for people with chronic diseases, including, and in particular, the role of prehabilitation prior to treatment. Dr. Santa Mina is also heavily involved in exploring implementation strategies for exercise into standard care.​

Dayna-Lynn Nevay ​
Dayna-Lynn Nevay, Genetic Counsellor
​Dayna-Lynn is a Canadian Certified Genetic Counsellor with a Masters in Genetic Counselling from the University of British Columbia. She has clinical experience in metabolic, general adult and cancer genetics. Her prior research interests include maternal/child health, metabolic diseases and pain. She joined the Fred A. Litwin Family Centre in Genetic Medicine in August 2017 and started with the GoodHope Ehlers-Danlos Syndrome program in September 2017

Lianne McLean 
​Lianne McLean, Business Manager
Lianne McLean, RN, MN has over 10 years of experience as a nurse in emergency, surgery and cardiac critical areas. She completed the Master of Nursing program at the University of Alberta and enjoys leading programs in delivering high-quality, patient-centred care.

EDS Self-​Management Program Team

​​​
Dr. Aliza Weinrib  
Aliza Weinrib, Lead Psychologist
Dr. Aliza Weinrib is a clinical health psychologist with more than ten years of experience in helping people who are coping with serious medical illness to live full and rewarding lives. Dr. Weinrib practices acceptance and commitment therapy and is the Board Chair of the Ontario chapter of the Association for Contextual Behavioral Science. In addition to leading psychology programming for the GoodHope Ehlers-Danlos Syndrome Clinic, she is the lead clinical psychologist for the Transitional Pain Service at Toronto General Hospital, which focuses on interdisciplinary management of acute, transitional, and persistent post-surgical pain. She is co-chair of the Opioid Crisis Task Force of the Canadian Psychological Association and adjunct professor at York University in the graduate program in clinical psychology.

Dr. Maxwell Slepian  
Maxwell Slepian, Psychologist
Dr. Max Slepian is a clinical health psychologist who specializes in helping individuals with complex and often painful medical conditions cope and even thrive in the face of adversity. Dr. Slepian received his PhD in Clinical Psychology from Ohio University, and recently completed his pre-doctoral residency in Behavioral Medicine and Rehabilitation Psychology at the University of Washington School of Medicine in Seattle, WA. In addition to working as a clinical psychologist, Dr. Slepian conducts pain research examining biopsychosocial contributors to the experience of pain in connective tissue disorders. More specifically, his work aims to improve understanding and find ways to enhance resilience in the face of pain and connective tissue disorders.
 
Laura Lopez Hernandez, Registered Physiotherapist
Laura completed her Masters in Physiotherapy at Queen’s University after pursuing an undergraduate degree in Biochemistry and Biomedical Toxicology at the University of Toronto. Laura brings a background in orthopedics through her former role as a community Physiotherapist and concurrent role as an inpatient Physiotherapist at Sunnybrook, where she works with patients following various knee, hip and shoulder surgeries. Laura believes uses the most current evidence through a combination of functional movement screening, individualized exercise prescription and education to ensure injury prevention and a successful return to activities of daily living. Laura has pursued additional training such as McMaster Contemporary Medical Acupuncture, vestibular rehabilitation and persistent pain management certifications.

Alyssa Franzese 
Alyssa Franzese, Kinesiologist​
​Alyssa is a Registered Kinesiologist with an honours undergraduate degree in Kinesiology and post-graduate certificate in Exercise Science and Lifestyle Management. She specialized in training and has several years of experience conducting fitness assessments and delivering exercise programming for clinical populations with complex needs. She has been a study coordinator on numerous trials examining the role of exercise in the management of disease and treatment-related adverse effects and looks forward to bringing her skills, knowledge and experience in clinical exercise physiology to the EDS program.​​

 
Sandra Tavares, Social Worker

Specialist Team​

Dr. Arnon Adler  
Dr. Arnon Adler, Cardiologist
Dr. Adler graduated from the Sackler School of Medicine, Tel Aviv University, Israel in 2003. He trained in Internal Medicine and Cardiology at Tel Aviv Medical Center. Dr. Adler moved to Canada in 2014. He completed a clinical/research fellowship in inherited arrhythmias and cardiac device implantation at the University of Ottawa Heart Institute, a clinical/research fellowship in Hypertrophic Cardiomyopathy at Toronto General Hospital and a research fellowship in cardiogenetics at TGH and the Ontario Institute of Cancer Research. His research ​interest is inherited cardiac disease.

Dr. Louis Liu  
Dr. Louis Liu, Gastroenterologist
Dr. Louis Liu is the Head of Gastroenterology in University Health Network and Sinai Health System, and the Director of the Clinical Motility Unit in University Health Network. Dr. Liu has been actively involved in medical education in undergraduate and post-graduated programs. He established the University of Toronto Neurogastroenterology and Motility Fellowship Program in 2009. Internationally, he is the University of Toronto Lead of the GI Residency Training Program at Addis Ababa University of Ethiopia and inaugurated the first Endoscopy Training Center in Ethiopia at the Tikur Anbessa Hospital with the support from World Gastroenterology Organization in 2015. He is a dedicated and accomplished ​educator and researcher.

Dr. Yvonne Tse  
Yvonne Tse, Gastroenterologist
Dr. Yvonne Tse completed a Bachelor of Science at Queen’s University and Doctor of Medicine at McMaster University. She went on to complete her Internal Medicine residency training at University of Western Ontario and her gastroenterology subspecialty training at the University of Toronto. Dr. Tse further pursued her fellowship training in clinical hepatology and Neurogastroenterology and Motility at the University Health Network (UHN). In 2014, she joined the Division of Gastroenterology at UHN as a clinical associate. In 2017, she completed the Master Teacher Program at University of Toronto. Dr. Tse was recruited as a Clinician-Teacher in 2018 at the rank of Assistant Professor in the Division of Gastroenterology of Department of Medicine in University of Toronto. Her clinical practice focuses on neurogastroenterology and motility. She is the GI lead in the multidisciplinary clinic for patients with Ehlers-Danlos syndrome at Toronto General Hospital. Dr. Tse is a dedicate teacher and has been appointed as the UHN site director of the GI Residency Training Program. She is a well-published author and has been an invited speaker in the national conferences organized by the Canadian Associate of Gastroenterology and Canadian Liver Foundation.
​​
Dr. Colleen Parker  
Colleen Parker, Gastroenterologist
Dr. Colleen Parker obtained a Bachelor of Sciences degree from McGill University in the field of biochemistry. She received her MD degree and completed her internal medicine and gastroenterology residencies at the University of Toronto. She completed advanced training in the field of neurogastroenterology and motility at the Vatche and Tamar Manoukian Division of Diges​tive Diseases and the G. Oppenheimer Center for Neurobiology of Stress and Resilience at the University of California, Los Angeles. Dr. Parker is currently a clinical associate in the Division of Gastroenterology at the University Health Network. In addition, she is currently completing a Masters degree in the field of Clinical Epidemiology through the Institute of Health Policy, Management and Education at the University of Toronto.

 
Meghan Skinner, Dietitian
Megan is a Registered Dietitian in the Ehlers-Danlos Syndrome program. She completed her undergraduate honours degree in Applied Human Nutrition at the University of Guelph in 2010 and her dietetic internship at Sunnybrook Health Sciences Centre in 2011. She has specialized in complex chronic disease management throughout her career and has held both regional and national education and training-based leadership roles in the field of diabetes education. Megan has previously managed a national curriculum and education program, including resources and group education workshops, in the area of self-management. She is passionate about translating research into evidence-based practice to improve patient outcomes and looks forward to bringing her patient-centred approach to the role that nutrition can play in living with EDS.

George Charames  
George Charames, Geneticist
Dr. George Charames received his MSc and PhD from the Department of Lab Medicine and Pathobiology, University of Toronto. He then went on to complete his Clinical Molecular Genetics Postdoctoral Fellowship at the Johns Hopkins School of Medicine in Baltimore, USA. He is a board certified Diplomate of the American Board of Medical Genetics and Genomics (ABMGG), and a Fellow of the American College of Medical Genetics and Genomics (ACMG). Since 2012, Dr. Charames has served in his current role as Co-Head of the Advanced Molecular Diagnostics Laboratory in Mount Sinai Hospital's Department of Pathology and Lab Medicine, Assistant Professor in the Department of Laboratory Medicine and Pathobiology at the University of Toronto, and Lab Director of Mount Sinai Services. Dr. Charames' research interests are in the development of genomic and proteomic strategies for the improvement of clinical molecular diagnostics. His translational research approach aims to improve precision medicine.

Dmitry Rozenberg  
Dmitry Rozenberg, Respirology​
Dr. Dmitry Rozenberg is a Respirologist at University Health Network who works closely with patients with advanced lung disease, lung transplantation and provides respiratory consultation for the Ehlers-Danlos Program. His research aims to understand the impact of skeletal muscle function on daily physical function, quality of life, health care utilization and transplant outcomes in patients with chronic lung disease. As a Respirologist with training in Kinesiology, Dr. Rozenberg is looking to translate his clinical expertise and passion for exercise training to improve health outcomes in those with lung disease.

 ​
Kieran Murphy, Neuroradiology
Professor Murphy graduated in 1986 from the Royal College of Surgeons in Ireland, completing residency and a neuroradiology fellowship at the University of Michigan, and an interventional neuroradiology fellowship at the University o​f Geneva. He was then recruited by Johns Hopkins University to lead the division of Interventional Neuroradiology from 1998 to 2008. He has started six medical device companies, two in France and four in the US. He has authored over 165 peer-reviewed publications, published several textbooks and mentored over 50 residents and fellows. He was the Scientific Chair of the Annual Society of Interventional Radiology (SIR) meeting in 2010 and a recipient of the SIR innovator of the year award in 2015. At UHN, Professor Murphy is tasked with mentorship of clinical faculty at the Techna Research Institute and developing a culture of innovation, incubation and entrepreneurial behaviour in the Techna faculty. His devices are used 60,000 times per year worldwide.



 Learn More About the Signs & Symptoms

  Hypermobile j​oints, dislocations and sprains

  • Joints easily move beyond the normal range of motion.
  • Joint comes completely out of its socket requiring active manipulation to put back in place.
  • Joint slides in and out of the socket often not requiring manual manipulation to put back in place.

  Poor healing, stretchy skin and bruising

  • Fragile skin that tears or bruises easily – especially over the forehead and shin.
  • Large skin bruises with trivial trauma that take more than 3 to 4 weeks to heal.
  • Slow and poor wound healing that results in wide flat/depressed scars.
  • Severe skin scarring and presence of several lumps on the body.

 ​ Chronic pain

  • Generalized muscle and joint pains.
  • Constant stiffness and spasms.

  Low blood pressure and POTS (Postural Orthostatic Tachycardia Syndrome)

  • Dizziness and sudden increase in heart rate after standing up.

  ​Migraines and headaches

  • Chronic recurrent headaches and migraines.
  • Postural headaches that resolve after lying down.

  Abdominal pains; functional gastrointestinal disorders

  • Digestive disorders, nausea, heartburn, abdominal cramps and alternating diarrhea and constipation.

  Allergies, autoimmunity, MCAS (Mast Cell Activation Disorder)

  • Frequent rashes and severe allergic reactions since birth.
  • Flushing and asthma-like symptoms.

  ​Weak pelvic floor

  • Desparate need to pass urine and urge to frequently pass urine multiple times throughout the day.
  • Sensation of incomplete bladder evacuation and decreased urine flow.
  • Pelvic pains.

  Fatigue, anxiety and poor sleep

  • Extreme and early tiredness.
  • Problems falling and staying asleep.​​​

 Treatment & Management of EDS

​​​​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:

  • Diagnosis and Care planning
  • Physiotherapy
  • Psychological Therapy
  • Genetic Counselling
  • Exercise Physiology
  • Social Worker
  • Specialist Referrals (EDS Group)
    • Cardiology
    • Pain Management
    • Gastroenterology
    • Respirology
    • Neuroradiology
    ​​

Neurological Care in EDS

Criteria for Neurosurgical Referral

  1. Confirmed diagnosis of Ehlers-Danlos Syndrome (EDS) with objective evidence to support a diagnosis of EDS completed by a specialist (with genetic testing and clinical evaluation) based on 2017 EDS criteria.
  2. Clinical presentation to suggest cranio-cervical instability or dysfunction of the brainstem/cervical cord.
  3. Imaging evidence of cranio-cervical instability or dysfunction of the brainstem/cervical cord.

Diagnostic Investigations Required to Support A Referral

Evaluation to support the referral should include:

  1. Flexion-extension x-rays. Evaluate for: C1-2 instability; cervical kyphosis; dynamic subaxial instability
  2. CT-scan: Skull base to C7. Evaluate for:
    • Anatomical abnormalities of the cranio-cervical junction (e.g., basilar invagination; platybasia)
    • Assimilation anomalies of the skull base/upper cervical spine
    • Anomalies of C1-2
    • Anomalies of the subaxial cervical spine
  3. Cervical Spine MRI to evaluate for:
    • Evidence of brainstem/upper cervical cord compression
    • Subaxial cord compression
    • Chiari malformation
    • Syringomylia

Criteria for Neurosurgical Intervention

  • Evidence of significant instability on dynamic imaging, with possible spinal cord/brainstem compression on MRI, and or neurological deficits to warrant a cranio-cervical fusion.
  • Presence of a reduced clival angle only, with tonsillar herniation, is not sufficient indication for intervention, nor should routine cranio-cervical fusion for a symptomatic Chiari Decompression be undertaken.