No one can explain exactly why Sue Duncan, upon her return from Cuba in 2016, was suddenly struck by viral encephalitis, a serious type of brain infection that can be caused by several different viruses.
The theory is that two pre-existing conditions collided in a perfect storm. Sue had been diagnosed with a lupus-like autoimmune disease at age 29, and as a child had contracted a herpes virus eye infection that occasionally caused a cold sore on her lip. Doctors and scientists suspect that the stress of travelling woke up the herpes virus, which had been lying dormant in her nerves. Something about her irregular immune system may have confused the virus. Instead of heading to the eye or lip, it took a wrong turn and headed to her brain.
The infection took hold quickly and became life-threatening. A series of miracles saved her life.
“I was talking to my sister in Montreal and I thought I was perfectly normal, but she later told me that I was actually going silent, taking long pauses,” says Sue. “She knew something was wrong, although I thought she was overreacting at the time.”
Sue’s sister persisted in calling for help, setting in motion a series of calls between other sisters in Ontario and Alberta, and Sue’s adult children in Toronto. They were able to get in touch with her husband, who was away at a conference, as well as local friends who broke into the house, found Sue having seizures, and called an ambulance.
When she arrived unconscious at the Dartmouth General Hospital, the young resident who saw her immediately prescribed the only antiviral available. He had seen a similar case and knew there was no time to wait for the results of a diagnostic test. The antiviral was for herpes-related encephalitis; test results later revealed that herpes was indeed the virus behind Sue’s nearly-fatal infection.
“I was so lucky that the one antiviral treatment available turned out to be for the virus I had. “
Sue proved herself resilient. Although full recovery took months, she soon returned to her church choir, playing guitar and her studies to certify as a parish nurse. She graduated only months after leaving the hospital.
In June 2017, the sister who had sounded the alarm to get Sue to the hospital little more than a year earlier succumbed to the complications of breast cancer. With the stress of this great loss, Sue’s autoimmune disease acted up again. Unfortunately, she experienced a rare and serious allergic reaction to one of the medications.
“It was as if I had a burn over most of my body,” says Sue. “I lost much of the skin on my upper body and developed sepsis.”
Thanks to excellent care at the QEII, the constant love and support of her family, and her own tenacity and faith, Sue survived and rallied.
“I’m a very lucky person” she says. “My grown children left their jobs in Toronto to take shifts at the hospital and at home with my husband, sisters and sister-in-law. Through it all, they all stayed positive and supported me and each other. This was so important in my recovery.”
Sue is also grateful to the team of professionals—including her family physician, specialists in dermatology, rheumatology, immunology, infectious diseases, and internal medicine, as well as many residents and nurses—for their knowledgeable care.
Now, Sue is back to her productive life. She works as a parish nurse in Dartmouth and is active with her family, friends and in her community. And, she is throwing her support behind Dalhousie Medical Research Foundation’s 2018-19 Molly Appeal. Funds raised will help researchers at Dalhousie Medical School discover new antiviral drugs and gain insights into how the immune system normally fights infections and why irregular immune systems can lead to chronic autoimmune disease like lupus.
“I am fortunate to be alive today and to have a great future ahead of me,” says Sue. “I’m reaping the benefits of previous research and the expertise of our researchers and clinicians.
“The Molly Appeal will assist our researchers and clinicians to expand their understanding and discover new treatments of many more conditions and infections,” says Sue. “As the research advances, even more people will benefit.”