Before COVID-19, Andréa Ceresa of Branchburg New Jersey was a healthy, active 46-year-old who managed a dental office by day and sang professionally by night, a woman who enjoyed yoga and jumped on a WaveRunner any chance she got. Now beset by a multitude of unshakeable symptoms, she said COVID-19 has transformed her into “a shell of what I was.”
She has severe, persistent diarrhea, constant nausea, dizziness, paralyzing fatigue, piercing headaches, numbness in her limbs, blurry vision, ringing in her ears and a loss of hearing — an insurmountable deficit for a musician. She gets rashes on her face, finds light and sun painful on her eyes, and suddenly finds herself feeling uncomfortably cold for no reason.
On top of all that is an alarming brain fog. “At some point in this conversation,” she warned, “I might lose my train of thought or forget words.”
“As time goes on and our infection rate goes up, the fallout is that an extraordinarily large number of people who were previously healthy, working and engaged in the economy will now become shadows of their former selves,” said Diana Berrent, founder of Survivor Corps, a grassroots organization connecting those who have been infected with COVID-19. Berrent said it has 107,000 members.
Ceresa lost her employer-sponsored health care and recently got on an Obamacare policy, but she worries how long she’ll have it. Meanwhile, hardly a day goes by that she doesn’t have some kind of medical appointment, including some at Mount Sinai Hospital in New York, which opened what Berrent said is one of only two centers in the United States specifically focused on those with “long COVID-19.”
Some researchers are delving into the subject, including Natalie Lambert, a medical researcher at Indiana University School of Medicine, who has partnered with Berrent’s group to amass a far more extensive list of COVID-19-related symptoms reported by long-haulers than the 11 symptoms CDC identifies. Lambert’s survey lists 98. Respondents characterize more than a quarter of those symptoms as painful.
When this will end — if it will end — doctors and specialists can’t tell. Nor can anyone at the Centers for Disease Control and Prevention, the National Institutes of Health, the World Health Organization or any other major health organization.
There appears to be no data yet on numbers of people experiencing serious symptoms over longer periods of time or detailed information about their circumstances, such as age, gender, medical histories or course of their illnesses. Complicating the data collection is that many of them, even those with debilitating symptoms, were never hospitalized.
As a result, Ceresa has no idea what life holds for her. “I have a plethora of preexisting conditions that I never had before,” she said. “I’m doing everything you can imagine to try to get better.
“If someone says, ‘Try this,’ I’ll try — I’ll walk on coals. The list of referrals I have is off the charts.”