NEW YORK: Three days after testing positive on Covid-19, “it all tasted like cardboard,” recalls 38-year-old Elizabeth Medina, who lost her sense of taste and smell at the start of the pandemic. A year later, she fears she will never get them again.
Medina has consulted ear, nose and throat doctors and neurologists, tested various nasal sprays and is part of a group of patients who are on experimental treatment and using fish oil.
To try to stimulate the senses, she adds copious spices to everything she eats, pours aromatic herbs into the tea, and regularly smells a bracelet soaked in essential oils.
But her attempts were in vain. Medina, a counseling consultant at a New York school, says she has lost many of the everyday pleasures she once enjoyed, including eating and cooking.
She says she cried every day for months.
Medina is one of more and more people with permanent anosmia – a poorly understood disorder that has become an underestimated consequence for many in a pandemic.
Most Covid-19 sufferers who lose the ability to taste or smell recover “in three or four weeks,” says Valentina Parma, a psychologist at Temple University in Philadelphia.
But 10 to 15 percent of them lose their senses in months, Parma said. He chairs the World Consortium for Chemosensory Research (GCCR), which was established at the start of the pandemic to study the problem.
The expert estimates that the loss of sensors will affect more than two million Americans and 10 million people worldwide.
Taste and smell are often less important than sight and hearing, and their loss is often considered less serious than the other effects of Long Covid; but they are a key part of socialization, Parma says, noting that “we choose partners based on smells.”
In addition, their disappearance is often covered not only by eating problems but also anxiety and even depression, Parma added.
Like other “anosmics,” Medina also found solace and solidarity in a support group organized by a hospital near her home.
Such groups have flourished on social media. The AbScent group, which was set up in the UK in 2019 as a charity, has estimated that its members on various platforms have risen from 1,500 to more than 45,000 since the start of the pandemic, according to founder Chrissi Kelly.
On the main page of the organization on Facebook, a question often arises that haunts Medina: “Will I ever regain my sense of taste and smell?”
At this stage, Parma said, “it’s hard to predict how things will develop.”
But there is one good indication that anosmics are on their way to recovery: the development of parosmia when people’s smell of familiar things is distorted, such as the smell of garbage while smelling coffee.
There is currently no known medication and the only treatment recommended without reservation is to smell four different scents twice a day. According to Parma, this works in 30% of cases, but only after three to six months of practice.
Given this uncertainty, it may come as no surprise that the likes of AbScent’s Kelly, who lost taste and smell after a sinusitis attack in 2012, and American Katie Boateng, who lost her senses in 2009, have become almost celebrity personalities.
They share their experiences and encourage the medical community to step up research and recognize the severity of their symptoms.
In 2018, Katie Boateng created the Scent Podcast, a mine of information and tips for her companions in an accident.
He is now part of a patient advocacy group that helps guide GCCR research.
Although Boateng has given up hope of healing herself, “I still strongly hope we can come up with research that will be able to cure people in the future,” she said.
While waiting for a medical breakthrough, many continue to perform daily sniffing exercises, sometimes with the help of a coach like Leah Holzel.
The food expert, who lost her scent from 2016 to 2019, has helped six people recover from anosmia since the start of the pandemic.
Many patients also cling to messages about improvements or healings that regularly appear on social media and enjoy the camaraderie provided by the groups.
“Almost exactly a year after I first lost the smell and taste, I’m fine now,” Dominika Uhrakova, who lives in Southampton, England, wrote on AbScent’s Facebook page.
“Wait, don’t lose hope and I wish you good luck,” the 26-year-old added.