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Patients form Ontario support network for inflammatory muscle diseases

Toronto, July 28, 2017

By Skaidra Puodziunas

Patients Paul Bond and Audrey Gouskos plan the first Ontario Myositis Network meeting with Dr. Ophir Vinik
Patients Paul Bond and Audrey Gouskos plan the first Ontario Myositis Network meeting in the office of Dr. Ophir Vinik, a rheumatologist at St. Michael’s. (Photo by Yuri Markarov)

At age 41, Audrey Gouskos was at the peak of her career, working in the fast-paced world of media relations at Queen’s Park and raising her young son.

But over a matter of weeks, she started to lose energy and one afternoon could barely make it to the other side of the room without being overcome by exhaustion. Gouskos was rushed to St. Michael’s Hospital in critical condition.

“I couldn’t walk, talk or breathe independently,” she said. “It all happened so fast. I literally lived in the St. Michael’s ICU for three months, intubated. It’s a miracle I’m still alive.”

Gouskos was diagnosed with late-stage myositis, an umbrella term for a rare condition that causes muscle inflammation. Specifically, she had dermatomyositis, which she has been managing for 15 years.

Part of the challenge for patients with myositis is that it is a rare condition. Only 10 in every million Canadians are diagnosed with it.

“This leads to a lack of awareness on how to appropriately identify and diagnose myositis within the medical community, and for patients, the resources available to manage its symptoms,” said Dr. Ophir Vinik, a rheumatologist at St. Michael’s. “Not every diagnosis of myositis leads to a near death experience as in Audrey’s case. It is often treatable, manageable and even reversible, if diagnosed early.”

Raising awareness and supporting and improving the lives of people affected by myositis are the reasons why patients Gouskos and Paul Bond partnered with Dr. Vinik and Dr. Rachel Shupak, a senior rheumatologist at St. Michael’s, to launch the Ontario Myositis Network.

   
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The Ontario Myositis Network had its inaugural meeting on June 8, with more than 50 patients and relatives in attendance.

“With any critical illness, it takes a network of medical, emotional and physical support to heal, and through the Ontario Myositis Network, we hope to address this,” said Gouskos. “We want patients to realize they can still contribute meaningfully to society.”

All involved stressed the importance of this being a patient-led support group.

“Patients can best address the challenges they face in accessing myositis care in the health-care system through their lived experiences,” said Dr. Vinik. “We hope this initiative brings patients together and empowers them to advocate for improved awareness, education and resources to better manage these diseases.”

For more information, email OntarioMyositisNetwork@gmail.com or follow the Ontario Myositis Network page on Facebook.

About St. Michael's Hospital

St. Michael’s Hospital provides compassionate care to all who enter its doors. The hospital also provides outstanding medical education to future health care professionals in more than 29 academic disciplines. Critical care and trauma, heart disease, neurosurgery, diabetes, cancer care, care of the homeless and global health are among the Hospital’s recognized areas of expertise. Through the Keenan Research Centre and the Li Ka Shing International Healthcare Education Centre, which make up the Li Ka Shing Knowledge Institute, research and education at St. Michael’s Hospital are recognized and make an impact around the world. Founded in 1892, the hospital is fully affiliated with the University of Toronto.