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Coronary critical care nurse and SARS survivor, Sylvia Gordon

Aftershock of SARS still felt among survivors

For 22 years coronary critical care nurse Sylvia Gordon helped save people's lives. But when SARS suddenly hit Canada in 2003, she had her own battle to fight.

Sylvia was one of the many health care workers in Canada that contracted the severe acute respiratory syndrome that killed 44 people in Toronto and nearly 800 worldwide. Now, almost eight years later, she is still struggling with symptoms.

"I haven't yet returned to the frontline," said Sylvia. "I try to maintain my level of activities, but it's still a work in progress."

Sylvia isn't the only one. Researchers at St. John's Rehab Hospital have found that SARS survivors have to cope with physical and psychological symptoms long after infection - comparable to a chronic physical illness.

"Doctors were trying to treat the illness, but at that time no one knew much about SARS," said Dr. Paula Gardner, psychologist and researcher at St. John's Rehab Hospital. "People who were infected were not always getting better."

Sylvia was one of the 40 people followed by St. John's Rehab researchers. The study looked at the long-term psychological effects of SARS survivors. Dr. Gardner and her research team used surveys to assess the physical and psychological health of participants during the first year after infection in 2004 and then again in 2007. They recently presented their findings at the International Congress of Behavioral Medicine in Washington D.C.

"After we compared both time frames we observed that patients were getting worse," said Dr. Gardner. "It was a surprising finding. We expected that patients would get better since they seemingly recovered from the acute phase of the illness."

According to their findings in 2004, 49 per cent of participants claimed their well-being, mental health and general health deteriorated since they contracted SARS. This number significantly increased to 88 per cent in 2007.

They also found that over 30 per cent of participants experienced significant symptoms of anxiety, depression and post-traumatic stress four years after infection.

"You have to remember that contracting SARS was a very traumatic event for the patients," said Dr. Gardner. "People were dying or were close to dying. And many of them were quarantined alone for long periods of time. It was very isolating for them."

Sylvia recalls her time spent in different hospitals and at home where she was quarantined for two weeks. She, like many of the survivors experienced feelings of stigmatization and fear of infecting others which furthered her feeling of isolation.

"It was very difficult," said Sylvia. "Everyone was scared and no one knew the severity of the problem."

She admitted that it was her background in health and joining a SARS survivors group at St. John's Rehab that helped her navigate through this challenging time in her life.

"I knew I needed to be active again," she said. "It was important for me to network with other survivors and share my knowledge when I could."

Sylvia was one of the more than 50 health care workers who participated in the St. John's Rehab All Systems Go SARS rehab program in 2004. In collaboration with the Workplace Safety and Insurance Board (WSIB), St. John's Rehab started the program to help patients who were struggling with long-term health problems resulting from SARS. The program offered physiatry, physiotherapy, occupational therapy, massage therapy, psychology, pharmacy and social services.

Many participants were nurses, but patients also included paramedics, clinicians, cleaners, and technicians. Most of them suffered from symptoms such as shortness of breath, sleep disturbances, major fatigue, anxiety, depression, memory and concentration problems, and muscle and joint aches and pains.

St. John's Rehab researchers are continuing to study the effects of SARS and are currently assessing symptoms of survivors seven years after infection. Findings for the study have important implications for the understanding, prevention and treatment of long-term psychological effects of infectious diseases; and for SARS survivors, such as Sylvia.

Although she continues to struggle with post-SARS health complications, including hypertension, and shortness of breath, Sylvia is determined, focused and optimistic. She continues to work on gaining strength and tries to remain active in the community and spends her time with her young grandchild.