Ehlers-Danlos Syndrome Clinic to Open in Ontario!
By: Robert Benzie Queen’s Park Bureau Chief
Great news for our EDS friends in Ontario. Many will now be able to find services in Ontario instead of having to travel to the US!
The Ontario Health Minister chose Leap Year Day — rarest on the calendar and to be officially designated Rare Disease Day.
On the rarest day of the calendar, Ontario is taking action on a rare disease.
Health Minister Eric Hoskins on Monday announced a new clinic for Ehlers-Danlos Syndrome (EDS).
“This is the aptly timed Rare Disease Day. It happens once every four years . . . rare as the diseases are,” Hoskins said of it being Feb. 29.
“People living with Ehlers-Danlos Syndrome and other rare diseases face enough challenges on a daily basis that finding the right care and support in Ontario shouldn’t be one of them,” the minister said.
“The new initiatives our government is pursuing will help people living with Ehlers-Danlos Syndrome and other rare diseases access the supports they need so they can receive the highest quality of care close to home,” he said.
EDS is caused by a genetic defect in the connective tissue that supports many body parts from skin to muscles and ligaments. It makes those living with it prone to chronic pain, blackouts, joint dislocations, and vision, bowel and bladder problems.
It affects about one in 5,000 people.
The new clinic would help primary-care health providers get information and guidelines on signs and symptoms, receive feedback from experts on treatment options, and expedite referrals to specialists.
Hoskins said the mandate of the new clinic could eventually be expanded to help doctors and nurses treat other rare diseases.
To that end, a working group of experts has been struck to see how services for other rare ailments could be improved.
Dr. James Rutka, co-chair of the Ehlers-Danlos Syndrome Expert Panel, said “the establishment of the joint adult and pediatric EDS clinic is a big step forward in providing multi-disciplinary care and treatment for EDS patients in Ontario.”
“This important model may also serve the needs of patients in the future who have similarly rare and complicated disorders,” said Rutka.
Progressive Conservative MPP Michael Harris (Kitchener-Conestoga), who long advocated for the families with rare diseases, is introducing legislation for the last day of February to be recognized as Rare Disease Day.
The hard work is paying off for those promoting local health care for our EDSers in Ontario.
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