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Tag: first-person stories

Radio | Ontario Today with Amanda Pfeffer

What questions do you have about COVID-19?

Dr. Fahad Razak joins Ontario Today and takes your calls. Razak is an internal Medicine Physician at St. Michael’s Hospital. He’s also the former scientific director of Ontario’s COVID-19 Science Advisory Table.

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They’re young and athletic. They’re also ill with a condition called POTS.

Kaleigh Levine was running drills in the gym with her lacrosse team at Notre Dame College in South Euclid, Ohio, when everything turned black.

“The coach wanted me to get back in the line, but I couldn’t see,” she remembered.

Her vision returned after a few minutes, but several months and a half-dozen medical specialists later, the 20-year-old goalie was diagnosed with a mysterious condition known as POTS.

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Severe COVID leads to higher risk of pulmonary fibrosis: research

For Vancouver resident Farrell Eckman, having a long conversation or attending a workout class without breaking into coughs is a major accomplishment.

The 50-year-old is one of many people who researchers say developed pulmonary fibrosis — a condition that thickens the tissue in lungs and can affect breathing — after experiencing a severe case of COVID-19.

In January 2022, Eckman was admitted to Vancouver General Hospital because she was having trouble breathing along with flu-like symptoms.

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Researchers say more support, education needed to help B.C. long-COVID patients

Better long-COVID awareness, education and support are needed for patients, according to Simon Fraser University researchers who conducted a study on the topic.

More education for health-care workers, including doctors and nurses, is one of the recommendations made in a report done by the SFU-based Pacific Institute on Pathogens, Pandemics and Society.

The report includes findings from two focus groups of unpaid caregivers, professional care providers, long-COVID researchers and people living with long COVID, identified as “longhaulers.”

“It’s an invisible and new condition,” said Kayli Jamieson, a longhauler who co-led the focus groups as part of a larger study with Kaylee Byers, an assistant professor in SFU’s Faculty of Health Sciences. “Many people don’t believe that long COVID is real or exists. Unfortunately, that permeates through the healthcare system.”

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‘Telework’ Can Be a Life Changer

If you are the family member of someone who’s highly immunocompromised, and you’re not able to protect yourself from infection in your workplace and your employer is insisting that you come back and work in an office where people have now shifted to the mindset that [COVID-19] is not that big a deal, if someone gets [sick] and you bring that home, that can be catastrophic.

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Long COVID still has no cure — so these patients are turning to research

When Lisa McCorkell got COVID-19 in March 2020, her symptoms were mild. Her physicians told her to isolate from others and that she would recover in a few weeks. But the weeks stretched into months and McCorkell, who was working on a master’s degree in public policy at the University of California, Berkeley, started having debilitating and bewildering symptoms: fatigue, dizziness and shortness of breath. Previously an avid runner, McCorkell found her heart racing from simple efforts.

She struggled to find an explanation, and soon realized that her physicians didn’t know any more about her condition than she did. To complicate matters, the limited availability of high-quality testing for the coronavirus SARS-CoV-2 in the early days of the pandemic left many of her doctors wondering whether her symptoms were really due to COVID-19 at all. “I didn’t have health-care providers that took me seriously,” McCorkell says. “That largely pushed me out of the health-care system.”

McCorkell turned instead to those who were experiencing the same puzzling symptoms and frustrations, joining a support group for people with what would eventually be called long COVID. As they compared notes, McCorkell and a handful of others — many of whom had research experience — realized that the information they were sharing might be helpful not only for those with long COVID, but also for those looking to study the condition. So, they founded a non-profit organization, called the Patient-Led Research Collaborative (PLRC), to design, provide advice on and even fund basic and clinical research into long COVID and other chronic illnesses.

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Video | Victorian children are diagnosed with long Covid

Victorian children as young as eight-years-old are being diagnosed with long Covid. Health experts warn it’s becoming more common, putting further pressure on the state’s health system.

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Video | Elle espère guérir de la COVID longue depuis 4 ans

Family physician Caroline Grégoire suffers from post-COVID-19 syndrome [long COVID]. She shares her symptoms and her life’s struggle over the past four years: to manage her energy. She deplores the government’s lack of help and says her chronic fatigue has not always been taken seriously, or even invalidated, by healthcare workers.

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Four years after COVID’s arrival, Austin’s ‘long haulers’ still search for answers

They do an activity that would normally not be tiring — it can be a pretty small mental or physical activity, [like] folding laundry, reading an email — and it just knocks them out and makes all their symptoms worse.

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Shingles cases are increasing in New South Wales. Experts say COVID might be why

I think that GPs would all agree that we’ve probably seen more cases of shingles over the last period of time over COVID. Absolutely, shingles is an illness that, theoretically and I think in practical reality, has been increased through COVID-19.

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Four years on: the career costs for scientists battling long COVID

Abby Koppes got COVID-19 in March 2020, just as the world was waking up to the unprecedented scale on which the virus was spreading. Her symptoms weren’t bad at first. She spent the early lockdown period in Boston, Massachusetts, preparing her tenure application.

During that summer of frenzied writing, Koppes’s symptoms worsened. She often awoke in the night with her heart racing. She was constantly gripped by fatigue, but she brushed off the symptoms as due to work stress. “You gaslight yourself a little bit, I guess,” she says.

Soon after Koppes submitted her tenure application in July, she began experiencing migraines for the first time, which left her bedridden. Her face felt as if it was on fire, a condition called trigeminal neuralgia that’s also known as suicide disease because of the debilitating pain it causes. Specialists took months to diagnose her with a series of grim-sounding disorders: Sjögren’s syndrome, small-fibre polyneuropathy and postural orthostatic tachycardia syndrome. To make time for the litany of doctors’ appointments, Koppes took a six-month “self-care sabbatical.”

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The World’s Moved On From Covid. Some Of Us Can’t

There is still no help for most of us, largely owing to the fact that there is not a test for Long Covid, or even established diagnostic criteria. Without that, it’s impossible to claim disability assistance unless you happen to have a qualifying secondary diagnosis.

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Video | International Long COVID Awareness Day

Friday was International Long COVID Awareness Day. The condition affects about 11 per cent of Canadians who get it. More than two hundred symptoms have been connected to long COVID, with shortness of breath and brain fog being the most common.

The symptoms of COVID can last for months and for most, they will subside. But there are many people who don’t recover or remain symptomatic.

A McMaster professor and long COVID researcher says she experienced symptoms for 18 months before recovering and the scariest part for her was the brain fog.

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Canadians with long COVID are struggling with myriad symptoms and patchwork treatments

A year ago, Sandy Choiniere was so weak from long COVID, she couldn’t hold her 20-month-old daughter in her arms while standing.

Today, she feels functional, but only because she’s being careful, listening to her body and resting when she needs to. “I sometimes still feel like a 35-year-old woman in the body of a 70-year-old lady,” she says. “Sometimes I have to cancel plans I have with friends because I am too tired,” something that has been hard to accept.

Ms. Choiniere is one of the Canadians who shared their stories of long COVID with The Globe and Mail in 2023. Twelve months later, we followed up to see how they’re doing.

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Doctors urge myth-busting, education to counter misinformation as measles cases rise

It was a horrible thing to see this young girl who was brain dead. She died in that hospital. We were told that one in 1,000 people who got measles had a serious complication and one in 10,000 could die. You think that’s pretty rare but millions of kids got it before vaccination. So even though the percentage was low the absolute numbers were considerable.

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Long COVID Patients Say WorkSafeBC Is Making Life Worse

Maryanne Andrew has been getting sicker and sicker since she caught COVID-19 in January 2022 while working in a Campbell River school.

And instead of helping, she says, WorkSafeBC’s attempts to require her to go back to work have made her symptoms worse.

Andrew is among more than two million Canadians still suffering from long-term COVID symptoms as of last summer, according to a Statistics Canada survey, which also found about half of the patients reported not seeing any improvements in their condition over time.

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Radio | Quatre ans avec la COVID longue, le témoignage d’une famille montréalaise

Three years after the WHO declared the pandemic, this report plunges into the heart of the upset daily life of a Montreal family affected by…

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