A pathway to independence for patients with rare disease

Nearly 20 years ago, Audrey Gouskos came through the St. Michael’s Hospital Emergency Department unable to walk. She had trouble breathing and would be intubated for six weeks. At 41 years old, with a busy career and a three-year-old son at home, Gouskos recalls having her last rites read as clinicians worked to determine what was going on.

This was the beginning of her journey with a rare disease known as
dermatomyositis.

 “St. Michael’s has really kept me alive,” says Gouskos.

Through the years, she has had flare ups that continue to require steroids to manage, been intubated twice, and now has a port for immunotherapy treatment. She has nine specialists at St. Michael’s and visits the hospital five to six times per month because her disease impacts so many different organs.

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