CHICAGO, Feb 20 (Reuters) – When COVID-19 hit in 2020, Ghenya Grondin of Waltham, Massachusetts, was a postpartum doula – someone responsible for helping young couples through the first weeks of their newborn at home.
Grondin, now 44, was infected with SARS-CoV-2 in mid-March that year – before there was testing, before social distancing or masks, and several months before that the medical community recognizes long COVID as a complication of COVID-19.
She is part of a community of first-wave long-haulers who have faced a new illness with no road map or medical support.
Three years later, at least 65 million people worldwide are estimated to have long COVID, according to a review of the evidence published last month in Nature Reviews Microbiology. More than 200 symptoms have been linked to the syndrome, including extreme fatigue, difficulty thinking, headaches, dizziness when standing, sleep problems, chest pain, blood clots, immune dysregulation, and even heart failure. diabetes.
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There are no proven treatments, but research is ongoing.
Those infected later in the pandemic have benefited from vaccination, which “protects at least to some degree” from the long COVID, said Dr. Bruce Levy, a Harvard pulmonologist and co-principal investigator of the National Institute of Health of 1 US$.15 billion RECOVER trial, which aims to characterize and find cures for the disease.
“The initial variant of the virus caused more severe disease than what we see in most patients now,” he said.
According to the Institute of Health Metrics and Evaluation at the University of Washington, in the first two years of the pandemic, women were twice as likely as men to develop long-term COVID, and 15% of all those affected three months continued to experience symptoms beyond 12 years. month.
An analysis of thousands of health records by the RECOVER trial found that non-Hispanic white women in wealthier areas were more likely than others to have a long COVID diagnosis. The researchers said this likely reflects disparities in access to health care and suggests that many long-term COVID cases in people of color go undiagnosed.
Grondin grew concerned when she continued to have symptoms three months after her initial infection – but there was no name for it at the time.
“I kept telling my husband that something is wrong,” she said.
Like her long-haul companions, she experienced a host of symptoms, including fatigue, sleep apnea, pain, cognitive dysfunctions and, in her case, a brain aneurysm. She described a scary moment when she was driving a car with her toddler in the back and had a seizure that left her in the path of oncoming traffic.
She has since been diagnosed with long COVID and can no longer work.
“It’s just like a constant punch in the face,” Grondin said.
Scientists are still trying to figure out why some people infected with COVID develop long-term symptoms, but syndromes like this are nothing new. Other infections such as Lyme disease can cause long-term symptoms, many of which overlap with long COVIDs.
Major theories about the root causes of long COVID include the virus or viral proteins remaining in the tissues of certain individuals; infection causing an autoimmune response; or the virus reactivating latent viruses, resulting in inflammation that damages tissue.
Kate Porter, 38, of Beverly, Massachusetts, a project manager for a financial services company, believes she was infected on a flight home from Florida in late March 2020.
She had daily fevers for seven months, muscle weakness, shortness of breath and excruciating nerve pain.
“I don’t think people realize how physically brutal everything was,” she said. In one of her darkest moments, Porter recalled, “I cried on the floor begging for something to take me in peace. I’ve never been like this.”
Frustrated by the lack of responses from a list of 10 specialists she saw, Porter explored alternative medicine. “It opened me up to other remedies,” she said.
Although her health has improved a lot now, she still suffers from almost daily migraines and neck pain that she fears will never go away.
Genie Stevens, 65, director of climate education, was infected while traveling from her home in Santa Fe to Cape Cod in late March 2020 to visit her mother, and never left. “It completely turned my life upside down,” she said.
She went to an emergency department looking for tests and was told there were none – the typical response in the spring of 2020, when scientists were scrambling to understand the nature of the virus and that the tests were rationed. She was sent home to fend for herself.
A lifelong practitioner of meditation, Stevens found comfort in it, finding it eased her symptoms.
Confined to her bed that spring, she focused on a former crabapple outside her bedroom. “I watched every bud unfold.”
Although largely recovered, Stevens still has bouts of brain fog, exhaustion, and high-pitched ringing in her ears when she pushes too hard. “That’s the surprisingly infuriating part of the disease. I feel totally fine, and then bam.”
Reporting by Julie Steenhuysen; edited by Caroline Humer and Rosalba O’Brien
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