Ontario's Ministry of Health is opening a new Ehlers-Danlos Syndrome (EDS) clinic. The clinic will be at two hospital sites: The Hospital for Sick Children and Toronto General Hospital, ensuring a smooth transition for paediatric patients to an adult clinic.
Believed to be the first of its kind in Canada, the clinic will offer patients access and co-ordinated care to a wide spectrum of specialists, and will be a single point of contact for those living with this illness, as well as for other physicians caring for these patients.
"The government's support for this clinic is much appreciated and will certainly benefit patients and their families as they transition from the pediatric setting at Sick Kids to longitudinal care provided by our multidisciplinary adult Ehlers Danlos team here at UHN," Dr. Peter Pisters, President & CEO, University Health Network, said at a news conference at Toronto General yesterday.
"Ehlers- Danlos Syndrome requires well-coordinated care provided by specialists throughout a lifetime. Teamwork between two leading organizations provides optimally integrated, world class co-ordination of care for EDS patients in Ontario."
EDS is a genetically inherited disease that includes a group of connective tissue disorders caused by defects of collagen metabolism. People with the disease are prone to chronic pain, joint dislocation and lost vision. EDS affects approximately one in 5,000 people and requires a combination of efforts to help diagnose and treat patients effectively. There is no known cure for the disease.
"I am encouraged that it will provide information for family physicians who have for so long been trying to co-ordinate our care without much support or direction," said Lauren, a patient who was diagnosed with EDS about three years ago. "I am also optimistic that it can provide the basis for much needed research into all aspects of Ehlers-Danlos Syndrome."
The Ontario Ministry of Health and Long-Term Care is also expanding University Health Network's inherited metabolic disorders and red blood cell disorders clinics.
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