UPFRONT | Roundup PUBLIC HEALTH Take 5 EDS, rare diseases focus of planned clinic in Ontario Ontario will set up a new clinic to help diagnose and treat people with Ehlers-Dan-los Syndrome, or EDS, and it could expand to help patients with other rare diseases, Health Minister Eric Hoskins announced. About 6,700 people in Ontario – an estimated one in 5,000 – live with EDS, a ge-netically-inherited disease that includes a group of connective tissue disorders, and causes acute and chronic pain, joint dislocation and lost vision. An expert panel set up by the province found EDS is difficult to diagnose because it affects multiple systems, such as the nervous and/or orthopedic system, skin, joints, blood vessels, and in-ternal organs, and symptoms can vary widely in each pa-tient. “A new centre of excel-lence at the University Health Network will be focused specifically on that disease, making sure we have the ex-pertise and resources to support those individuals in Ontario living with EDS,” said Hoskins. “That centre of excellence has the potential to expand to look at other rare diseases.” Just finding a doctor in Ontario with expertise in EDS has proved next to im-possible for some patients, who complain the province won’t pay for treatment in the United States. The new clinic will help people with rare diseases like EDS by giving doctors a single point of contact for information on related signs and symptoms, and to get advice from clinical experts 8 Canadian Chiropractor May 2016 on diagnosis and treatment options. Progressive Conservative MPP Michael Harris, who has a private member’s bill to get more help for people with rare diseases, says too often they suffer in isolation and without the same resources available to people with more commonly diagnosed dis-eases. “While there are one in 12 Canadians affected by a rare disease, many in the public, the media and government are unaware of the challenges patients face to get diagnosis and treatment,” he said. Durhane Wong-Rieger, president of the Canadian Organization for Rare Disor-ders, said up to half of pa-tients can’t get a proper diag-nosis. “There’s nothing more lonely, and nothing more alone, than to be a parent who is told your child has a rare disease, or in many cases, as with our family, having a child in which the disease is undiagnosed,” she said. Harris introduced a mo-tion to declare the last day of February as Rare Disease Day because there are about 7,000 different disorders af-fecting patients in Ontario. “While we see today some acknowledgment from this government on the need to address the challenges faced by rare disease patients, it’s my hope through designa-tion and recognition of Rare Disease Day in Ontario, we can help move that acknowl-edgment to action and the answers suffers deserve,” he said. – Keith Leslie The Canadian Press NUMBER CRUNCHING Two decades Canadian Chiropractor is 20 years old! To commemorate this milestone, here are some facts you may not know about the magazine. 6,95 0 Chiropractors with regular subscription to Canadian Chiropractor magazine 1996 The year Canadian Chiropractor magazine was launched Number of issues the magazine has published to date Illustration: Brian Fray five Number of editors in the last 20 years 139 www.canadianchiropractor.ca
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