The GoodHope Ehlers Danlos Syndrome Clinic: development and implementation of the first interdisciplinary program for multi-system issues in connective tissue disorders at the Toronto General Hospital.

Connective Tissue Connective Tissue Diseases / diagnosis Ehlers-Danlos Syndrome / diagnosis Hospitals, General Humans Joint Instability Quality of Life
Connective tissue disorders Diagnosis and treatment Ehlers Danlos Syndrome Hypermobility spectrum disorders

Journal

Orphanet journal of rare diseases
ISSN: 1750-1172
Titre abrégé: Orphanet J Rare Dis
Pays: England
ID NLM: 101266602

Informations de publication

Date de publication:
10 08 2021
Historique:
received: 03 09 2020
accepted: 18 07 2021
entrez: 11 8 2021
pubmed: 12 8 2021
medline: 7 10 2021
Statut: epublish

Résumé

Ehlers-Danlos Syndrome (EDS) are a heterogeneous group of genetic connective tissue disorders, and typically manifests as weak joints that subluxate/dislocate, stretchy and/or fragile skin, organ/systems dysfunction, and significant widespread pain. Historically, this syndrome has been poorly understood and often overlooked. As a result, people living with EDS had difficulty obtaining an accurate diagnosis and appropriate treatment, leading to untold personal suffering as well as ineffective health care utilization. The GoodHope EDS clinic addresses systemic gaps in the diagnosis and treatment of EDS. This paper describes a leap forward-from lack of awareness, diagnosis, and treatment-to expert care that is tailored to meet the specific needs of patients with EDS. The GoodHope EDS clinic consists of experts from various medical specialties who work together to provide comprehensive care that addresses the multi-systemic nature of the syndrome. In addition, EDS-specific self-management programs have been developed that draw on exercise science, rehabilitation, and health psychology to improve physical and psychosocial wellbeing and overall quality of life. Embedded into the program are research initiatives to shed light on the clinical presentation, underlying mechanisms of pathophysiology, and syndrome management. We also lead regular educational activities for community health care providers to increase awareness and competence in the interprofessional management of EDS beyond our doors and throughout the province and country.

Identifiants

DOI: 10.1186/s13023-021-01962-7 PMID: 34376220 PMC: PMC8353438
pubmed: 34376220
doi: 10.1186/s13023-021-01962-7
pii: 10.1186/s13023-021-01962-7
pmc: PMC8353438
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

357

Informations de copyright

© 2021. The Author(s).

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Auteurs

Nimish Mittal (N)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada. Nimish.Mittal@uhn.ca.
Temerty Faculty of Medicine, Division of Physical Medicine and Rehabilitation, University of Toronto, Toronto, ON, Canada. Nimish.Mittal@uhn.ca.
Faculty of Kinesiology and Physical Education, University of Toronto, Toronto, ON, Canada. Nimish.Mittal@uhn.ca.
Department of Anaesthesiology and Pain Medicine, University Health Network, Toronto, ON, Canada. Nimish.Mittal@uhn.ca.
ORCID: 0000-0002-6291-1956

Daniel Santa Mina (DS)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Faculty of Kinesiology and Physical Education, University of Toronto, Toronto, ON, Canada.
Department of Anaesthesiology and Pain Medicine, University Health Network, Toronto, ON, Canada.

Laura McGillis (L)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.

Aliza Weinrib (A)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Department of Anaesthesiology and Pain Medicine, University Health Network, Toronto, ON, Canada.
Department of Psychology, York University, Toronto, ON, Canada.

P Maxwell Slepian (PM)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Department of Psychology, York University, Toronto, ON, Canada.

Maxim Rachinsky (M)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Department of Anaesthesiology and Pain Medicine, University Health Network, Toronto, ON, Canada.

Stephanie Buryk-Iggers (S)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Faculty of Kinesiology and Physical Education, University of Toronto, Toronto, ON, Canada.

Camille Laflamme (C)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.

Laura Lopez-Hernandez (L)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.

Laura Hussey (L)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.

Joel Katz (J)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Department of Anaesthesiology and Pain Medicine, University Health Network, Toronto, ON, Canada.
Department of Psychology, York University, Toronto, ON, Canada.
University of Toronto Centre for the Study of Pain, University of Toronto, Toronto, ON, Canada.

Lianne McLean (L)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.

Dmitry Rozenberg (D)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Temerty Faculty of Medicine, Division of Respirology, Ajmera Transplant Program, Toronto General Hospital Research Institute, UHN, University of Toronto, Toronto, ON, Canada.

Louis Liu (L)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Division to Temerty Faculty of Medicine, Division of Gastroenterology, University Health Network, University of Toronto, Toronto, ON, Canada.

Yvonne Tse (Y)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Division to Temerty Faculty of Medicine, Division of Gastroenterology, University Health Network, University of Toronto, Toronto, ON, Canada.

Colleen Parker (C)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Division to Temerty Faculty of Medicine, Division of Gastroenterology, University Health Network, University of Toronto, Toronto, ON, Canada.

Arnon Adler (A)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Division of Cardiology, Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, ON, Canada.

George Charames (G)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.

Robert Bleakney (R)

Joint Department of Medical Imaging, University of Toronto, Toronto, ON, Canada.

Christian Veillette (C)

Department of Surgery, Division of Orthopedics, University of Toronto, Toronto, ON, Canada.

Christopher J Nielson (CJ)

Department of Surgery, Division of Orthopedics, University of Toronto, Toronto, ON, Canada.

Sandra Tavares (S)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.

Stephanie Varriano (S)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.

Juan Guzman (J)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Department of Medicine, McMaster University, Hamilton, ON, Canada.

Hanna Faghfoury (H)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Temerty Faculty of Medicine, Division of Medical Genetics, University of Toronto, Toronto, ON, Canada.

Hance Clarke (H)

GoodHope Ehlers Danlos Syndrome Program, Toronto General Hospital, 200 Elizabeth Street, Toronto, ON, M5G 2C4, Canada.
Department of Anaesthesiology and Pain Medicine, University Health Network, Toronto, ON, Canada.
University of Toronto Centre for the Study of Pain, University of Toronto, Toronto, ON, Canada.

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Classifications MeSH

questionsmedicales.fr › Tissus › Tissu conjonctif › The GoodHope Ehlers Danlos Syndrome Clinic:...
questionsmedicales.fr › Maladies de la peau et du tissu conjonctif › Maladies du tissu conjonctif › The GoodHope Ehlers Danlos Syndrome Clinic:...
questionsmedicales.fr › Maladies de la peau et du tissu conjonctif › Maladies de la peau › Maladies génétiques de la peau › Syndrome d'Ehlers-Danlos › The GoodHope Ehlers Danlos Syndrome Clinic:...
questionsmedicales.fr › Établissements, main d'oeuvre et services de soins de santé › Établissements de santé › Hôpitaux › Hôpitaux généraux › The GoodHope Ehlers Danlos Syndrome Clinic:...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › The GoodHope Ehlers Danlos Syndrome Clinic:...
questionsmedicales.fr › Maladies ostéomusculaires › Maladies articulaires › Instabilité articulaire › The GoodHope Ehlers Danlos Syndrome Clinic:...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Mesures épidémiologiques › Démographie › État de santé › Qualité de vie › The GoodHope Ehlers Danlos Syndrome Clinic:...