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 What We Do

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

What is Ehlers-Danlos Syndrome?

There are 13 different types of EDS. Hypermobile EDS (hEDS) 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 a genetic trait and exists along a continuum. Hypermobility can be congenital (you are born with it) or acquired (developed over time) and is multifactorial in nature. Joint hypermobility is not always secondary to an underlying connective tissue disorder. Hypermobility is common in the general population (approximately 15-20%) and can affect 1 to 2 joints (localized joint hypermobility) to multiple joints (generalized joint hypermobility). The medical team will assess if a patient has generalized joint hypermobility and whether or not that hypermobility is caused by an underlying connective tissue disorder. The spectrum of hypermobility ranges from asymptomatic hypermobility to hypermobile EDS (hEDS) with generalized hypermobility spectrum disorder (G-HSD) acting as a bridge between these conditions.

Individuals with symptomatic generalized joint hypermobility who present with specific musculoskeletal manifestations and/or inherited connective features who do not meet the 2107 EDS nosology may now be labelled as having generalized hypermobility spectrum disorders (G-HSD). G-HSD and hEDS can be equal in severity and require the same level of management, validation and care.

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 the formation of abnormal or weak collagen that is unable to support the body organs and other tissues.

Signs & Symptoms

Please see Signs and Symptoms tab.

Diagnosis & Treatment

The route to diagnosis may depend on several factors. The pathway begins with an 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.

If your referral has been accepted, wait times for initial assessment may be up to two years.

During this time you should work with your primary care team to manage your symptoms (see Health Information tab for more details).

Diagnostic assessments take up to 2.5 hours and may be broken into two parts. You will be required to undergo a detailed review of your past medical history and a physical examination to assess for features of EDS.

Genetic testing is not required to diagnose hypermobile EDS. Genetic testing will only be offered if an individual meets the minimum clinical criteria for a rarer form of EDS.

The GoodHope EDS clinic is a specialist, consultative program, which will assess patients for a diagnosis of EDS/G-HSD. Our team provides diagnosis and self-management support, but day-to-day care will remain with the patient's primary care teams. We are unable to support urgent care requests or take over ongoing management of patients.

How to Prepare

Please bring copies of reports related to any genetic testing and associated consultations.

Initial assessments may be broken into two parts:

  • A virtual appointment to review past medical history and symptoms
  • An in-person physical examination

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 ensure advocacy efforts, patient and caregiver education initiatives, and vital research is undertaken to meet the needs of this unique and often misunderstood patient population.

 Materials and Resources to Help You

The GoodHope EDS clinic is the only clinic of its kind in Canada: As a result, wait times are extensive. This can be challenging and frustrating for both patients and their healthcare providers.

EDS is treated symptomatically and requires the care of multiple practitioners to manage individual symptoms. If your referral has been accepted for assessment we urge you not to wait for your appointment to seek care.

Please see below for some steps that can be taken while you await your diagnostic assessment.

General Recommendations

 Physical activity:

  • It is very important to keep moving!
    • Daily exercise (up to 30 minutes of low impact physical activity 3-5 days per week)
    • Avoid contact sports, especially in cases of know joint instability
    • Recommended activities include Pilates, swimming/water aerobics, and recumbent biking
      • Patients to engage in physiotherapy – Focus on improving strength, proprioception and general conditioning
      • Consider referral to Physiatry for detailed musculoskeletal assessment in patients with multiple musculoskeletal related concerns

 Pain Management:

  • Learn about and understand the mechanisms of chronic pain
  • Over the counter pain medications as tolerated (avoid daily use of NSAIDS)
  • Daily exercise
  • Mental health support with referral to psychiatry or psychology as required
  • Bracing as required (used only as needed in addition to strengthening exercises) to support unstable joints
    • Referral to comprehensive, multidisciplinary pain management specialists as required (for example, TAPMI in Toronto)
    • For chronic headaches/migraines consider using www.mychronicmigraine.ca to find a local headache specialist
    • The Arthritis Society has resources for patients with hypermobility awhich may include limited physiotherapy and occupational therapy support

 Diet:

  • Every patient is different, but some EDS/G-HSD patients find benefit from low histamine, low FODMAP, gluten or lactose-free diets
  • Increase salt (at least 3-5g) and fluid (3-5L) intake for those with orthostatic/postural symptoms (discuss with your primary care practitioner before making any dietary changes)
    • Consider dietitian referral for assistance in identifying food triggers and developing appropriate dietary plans

For patients with unmet GI needs consider referral to GI specialist for work-up.

For patients with evidence of autonomic dysfunction (POTS) consider referral to a Cardiologist.

For patients with evidence of/or Mast Cell Activation Syndrome (MCAS) consider referral to Immunologist.

For more information, please consider the following resources:

 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 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.

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 the 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.


Pranab Kumar  

Pranab Kumar, Physician
Pranab Kumar is an anesthesiologist with subspecialty training in chronic pain management. His expertise involves comprehensive multimodal pain management including USG and fluoroscopy-guided interventions and advanced therapies like neuromodulation for refractory neuropathic pain. He is a committee member of World Institute of Pain, North American Neuromodulation Society, and currently serves as the newsletter liaison for the Ultrasound Chronic Pain special interest group of the American Society of Regional Anesthesia and Pain Medicine. He has practiced in his professional career in India, United Kingdom and Canada, and his current roles include initial patient assessment and follow-up of patients at GoodHope Ehlers-Danlos Syndrome Program.


 

Tania Di Renna, Physician
Tania Di Renna completed her medical school and Anesthesiology residency training in Ottawa. She obtained a chronic pain fellowship at St. Michael's Hospital in Toronto and has spinal cord stimulation training from Montreal Neurological Institute. She is currently the Medical Director of the Toronto Academic Pain Medicine Institute (TAPMI). TAPMI is the comprehensive interdisciplinary academic pain program serving as the hub for chronic pain care in Toronto. She is also the Medical Director of the Chronic Pain Clinic at Women's College Hospital and an Anesthesiologist at UHN. She served as the co-chair of the HQO Guidelines for Chronic Pain and is part of the Ontario Chronic Pain Network.


Laura McGillis  

Laura McGillis, Nurse Practitioner
Laura is a Nurse Practitioner in the GoodHope Ehlers-Danlos Syndrome program. She completed her undergraduate degree in Nursing Science at Queen's University and Masters of Nursing with Adult Nurse Practitioner specialty from University of Toronto. She carries 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. Her role in the EDS program involves assessing and diagnosing patients, patient management and follow-up, research and program support.


Jennifer Sousa  

Jennifer Sousa, Administrative Assistant
Jennifer Sousa is an Administrative Assistant at the Ehlers-Danlos Syndrome program as of 2021. She completed her undergraduate degree in Health Studies at York University in 2019. Prior to supporting the EDS clinic, Jennifer assisted the Health Records Department and a Clinical Research Trial at Toronto Grace Hospital. Her areas of interest are eHealth and clinical research.


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, 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.


Frances Hoy  

Frances Hoy, Manager, Allied Health, EDS and Hearts & Minds Clinic
Frances Hoy completed her Bachelor in Physiotherapy at the University of Western Ontario and her Masters in Health Administration at the University of Toronto. She has been in various clinical and leadership positions at UHN and enjoys leading programs in delivering high-quality patient care.


EDS Self-Management Program Team

Dr. Aliza Weinrib  

Aliza Weinrib, 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 illnesses 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.


Dr. Molly McCarthy  

Molly McCarthy, Psychologist
Dr. Molly McCarthy is a clinical health psychologist (supervised practice). She received her PhD in clinical psychology from York University and completed her predoctoral residency at St. Joseph's Healthcare Hamilton. She has worked with individuals living with a wide range of medical conditions including cancer, pain, and lung and kidney diseases. Many of her patients have had long, and at times very challenging, experiences navigating their healthcare. She also has experience working with adults who have a history of chronic invalidation, helping them to develop skills to better manage their emotions and lead a life that aligns with their values. Her research has primarily focused on supporting individuals and couples in their adjustment to life with an ostomy following treatment for colorectal cancer. Through her work, Dr. McCarthy strives to increase access to mental health support within the medicalized healthcare system.


Laura Lopez Hernandez  

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.


Encarna Camacho Perez  

Encarna Camacho Perez, Kinesiologist
Encarna is a Registered Kinesiologist with a Masters in Exercise Sciences from the University of Toronto specializing in Exercise Oncology. She has extensive experience developing exercise programs for a wide range of individuals, from elite athletes to cancer patients. Encarna believes in the importance of exercise as a therapeutic tool in the management of chronic pain and works with EDS and HSD patients to create personalized exercise plans that meet their functional needs and goals. She is also a research coordinator at the Department of Respirology, specializing in exercise and inspiratory muscle training interventions in EDS, COPD, and lung transplant patients.


Lisa Palmer  

Lisa Palmer, Registered Social Worker
Lisa is a registered social worker in the Ehlers-Danlos Syndrome program. She graduated with a Bachelor of Arts degree in Psychology in 2010, a Bachelor of Education degree in 2012 and completed a Master of Social Work degree at the University of Toronto in 2015. In 2019, she was appointed as an Adjunct Lecturer in the Factor-Inwentash Faculty of Social Work at the University of Toronto. She is experienced in working with individuals with complex chronic medical and mental health conditions and intellectual disabilities and their families. She supports individuals in examining challenges and concerns and assists in navigating appropriate resources.


Stephanie Varriano  

Stephanie Varriano, Registered Dietitian (MLOA)
Stephanie completed her undergraduate degree in Nutrition & Dietetics at Western University followed by her dietetic internship at University Health Network in 2013. Stephanie's background is in chronic disease management and specialty diabetes care. She is also a Certified Diabetes Educator within the endocrine clinic at Toronto General Hospital, where she works with those living with type 1 and type 2 diabetes. Within the GoodHope EDS clinic, Stephanie supports patients in self-management of EDS through diet and nutrition.


Specialist Team

Dr. Arnon Adler  

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  

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-graduate 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 at 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 dedicated 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 Digestive 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.


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 of 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 joints, dislocations and subluxations (partial dislocations)

  • 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

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

  Fatigue, anxiety and poor sleep

  • Extreme and early tiredness
  • Problems falling and staying asleep

  Mental health

  • Anxiety
  • Depression​

 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/G-HSD as follows:

  • Diagnosis and care planning
  • Physiotherapy
  • Psychological Therapy
  • Genetic counselling
  • Exercise physiology
  • Social worker
  • Registered dietitian
  • Specialist Referrals (EDS Group)
    • Cardiology
    • Pain management
    • Gastroenterology
    • Respirology
    • Neuroradiology

The GoodHope EDS clinic will work with patients to develop a patient-led self-management program which may include referrals to a number of the services listed above.

Our specialist programs will provide an initial assessment with recommendations that will be sent to the local primary care provider or specialist. In most cases, patients will be provided with a maximum of 2-4 follow-up visits with the specialists/allied health team member to review results and outcomes of interventions. After this, ongoing care will return to the local primary care provider or specialist. We cannot currently provide long-term specialist/allied health follow-up in this clinic.

All resources are in PDF  format unless otherwise indicated.


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.