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Tag: first-person stories

Teens and kids with long COVID are showing surprising new symptoms

Rose Lehane Tureen is one busy teenager.

The 16-year-old is class president, an Irish step dance champion, singer, cross-country runner and straight-A student at her high school in Maine.

Her accomplishments belie the reality that she suffers from a debilitating headache that has lasted for more than four years, one of the several long COVID symptoms she’s endured since an infection in March 2020.

At the beginning of her illness, Rose went to the emergency room half a dozen times and was hospitalized twice with dizziness and blinding head pain. She also had red and swollen fingers, toes and ears; peeling skin; joint pain; problems controlling her temperature and terrible dreams.

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Opinion: Closing long-COVID clinics a devastating blow to patients

I was dismayed to see Alberta Health Services’ decision to abruptly shut down the three long-COVID clinics and outpatient programs last week. This was done without any consultation, notice or consideration for those who access these crucial health care services.

As a long-COVID patient I was personally able to access their rehab services, which were incredibly helpful for me. Many may not realize how long-COVID impacts the entire body, and the extent of care supports many long-COVID patients require.

I went from being a very active person to being homebound and unable to work. The support I received through the clinic helped me regain some of my function and made my activities of daily living more manageable.

Through the clinic I was able to access cardiac and respiratory testing, as well as many rehabilitation therapists, including a physiotherapist, occupational therapist, recreational therapist (so critical when you’re housebound), a speech language pathologist, and a social worker.

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Fallout ensues after the closure of long-COVID outpatient program

Those suffering from long-COVID in Alberta are fighting back after the government informed them the Long-COVID Inter-Professional Outpatient Program was ending.

For some, COVID feels like a distant memory, a time when the world seemed to stop as everyone navigated the pandemic. Yet for many, it’s not in the rearview mirror, it’s still an ever-present reality and daily fight.

Jennifer Hare has had long-COVID for three years.

“Literally, my entire life is planned whereas before, I was a normal human being,” said Hare.

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Too many children with long COVID are suffering in silence. Their greatest challenge? The myth that the virus is ‘harmless’ for kids

Before she got sick with long COVID, Vivien* was at the top of all of her classes at school. She loved playing basketball and netball and running around with her dogs — she’d even take herself for runs around her family’s sprawling property in regional New South Wales, just for fun. She’s still only 12 but for the longest time Vivien has dreamed of being a vet when she grows up. “And she was so social,” her mother Katie* says. “My husband and I are both introverts. Not V — she would party every day if she could.”

Now, two years since she caught SARS-CoV-2 for the first time, a “good day” for Vivien looks nothing like it used to. She’s always exhausted, but her achy limbs might feel less tingly and weak; perhaps her upset stomach is calm, and her brain fog has cleared enough that she can do some school work or call a friend. On a really good day, she can manage a visit with her grandparents, so long as she’s prepared to spend the evening in bed. “Long COVID makes my body feel weak,” Vivien says. “But I tell myself I am still powerful.”

She’s strong because she has to be. Like many kids with long COVID Vivien has seen a dizzying number of doctors, not all of whom have believed or helped her. She’s made the tricky transition to homeschooling, learned to manage her turbulent symptoms with pacing and medication, cried fat tears of frustration after doing too much and wiping herself out.

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International DJ forced to give up his dream after long Covid leaves him bedridden for a year

A DJ who traveled the world before he suddenly became bedridden for a year with long Covid, causing memory loss and mobility issues, has since “lost his career” and now predominantly spends his days lying down.

Rowan Clarke, 32, a part-time video editor and sound designer from Colchester, contracted Covid-19 in 2021 and progressively got “sicker and sicker” to the point where he was in constant pain, could not remember his own phone number and could hardly walk.

On top of this, Rowan had constant headaches, meaning he could barely work and look at his emails, and ended up having to close his recording studio.

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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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