It started with an excruciating sore throat and 10 days of headaches. Then a dry cough – a classic sign of COVID-19 – also developed.
WhiteFeather Hunter has been fighting for months with persistent symptoms compatible with the new coronavirus, but was not initially tested for the virus when she fell ill in March.
She is not alone. Along with 51 other Canadians, Hunter signed an open letter to Dr. Theresa Tam and each provincial chief medical officer of health asking for help for people with persistent symptoms of COVID-19.
The group, which has connected via an online support network for those who have contracted the virus, calls for greater public awareness of the possibility of prolonged symptoms.
Without broad access to testing at the start of the pandemic, people who signed the open letter say they were presumed positive or had close contact with a confirmed case, but fell into a gray area where they did not was able to access a test. Because of the persistent symptoms, they do not know if they remain infectious and cannot pass screening questionnaires that could allow them to access certain medical services.
In addition, the ubiquity of false negative tests could mean that those struggling have been misdiagnosed. A study published in early May has shown that tests can produce false negatives, especially in the early days of the disease. 21 days after the onset of symptoms, the risk of false negatives can reach 66%.
The Star spoke to three people who signed the letter and who all experienced symptoms consistent with the disease but were never diagnosed with the virus.
Hunter, who was preparing her doctorate in Australia when she first fell ill, had no fever and no travel history, although her partner recently returned from a trip abroad.
“We went to the COVID clinic together and they didn’t want to test us,” she told The Star on Tuesday by phone. “And the reason they didn’t test me was because I hadn’t traveled, even though my partner had traveled. And they weren’t testing him because he didn’t have a fever. “
Over the course of several weeks, her cough seems to have subsided. The couple returned to Canada in early April. “In … three or four days, all of my symptoms returned,” said Hunter. “I started to feel very intense chest pain and pressure on my chest, feeling like someone was actually standing on my chest.”
The pain was so intense that it looked like a heart attack, which prompted her to take an ambulance to the hospital. Although she was refused a test in Australia, Hunter was finally able to be tested for the virus in mid-April, a full month after her symptoms started. “A few days later, the test came back negative,” she said.
“I was perfectly healthy before that. I was cycling 200 kilometers a week when I was in Australia. I was sort of at the peak of my health, “said Hunter. “I have never had any health problems like this. I have never been sick. “
Elisa Harvey-LaPlante fell ill when Ontario began closing for the lockout. She overcame residual symptoms that never went away and was only tested in late May. This test came back negative.
“I still definitely have a little cough every day. I certainly still have phlegm in my lungs. It’s not great. And I don’t know what it means in the long run. “
She said she wanted to see broad health support offered to people who had persistent symptoms but did not test positive.
Emily Shepard fell ill in late March. It is unknown where she was infected, and at first she thought it was the remains of a cold. With no sense of smell and no pressure in the chest, Shepard began to suspect that she had COVID-19.
She has not been tested for the virus, following the advice of doctors for self-monitoring and home isolation. Shepard stated that his symptoms match those of people who may have tested positive for COVID-19.
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Weeks later, Shepard continues to experience fatigue, dizziness and shortness of breath due to her illness. Many times she thought that her symptoms were only to return.
“I would get better and think” yes, I’m about to fix it “and then get worse,” said Shepard. “I even stopped updating on Facebook, because I was just thinking, I don’t mean to say I’m better when clearly I don’t know what’s going on here. “
Shepard was in good health before falling ill. “At this point in the summer, I would love to be on my bike by the lake or in the middle of the woods,” she said. “My symptoms prevented me from doing it. I’ve had so many relapses that now, even when I’m having a good day and I feel like I’m on the right track, I’m afraid of doing anything that could make me back off. ”
All three hope that the presentation of their stories and the open letter will encourage the government to research the long-term repercussions of COVID-19 and to update a public health policy that reflects the possibility of a disease. prolonged.
“If the government listens to us and does something about public health policies or other systems to support people on an ongoing basis, it will be incredible,” said Shepard. “But if they don’t, the least I hope we can do with our letter is to let people know, if they don’t already, that they are not alone.” “