Suddenly, three days after testing positive for COVID-19, “everything tasted like cardboard”: Elizabeth Medina, 38, lost taste and smell at the start of the pandemic in March 2020. A year later, she despairs at the idea of never getting them back.
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A school counselor at a New York college, she has seen ENT doctors, neurologist, neurosurgeon, tried various nasal sprays, and is part of a group of patients who are testing a treatment with fish oil.
To stimulate her sense of smell, she puts tons of spices in all her dishes, aromatic herbs in her tea, constantly sniffs a bracelet impregnated with essential oils.
In vain. This mother of two says she lost many everyday pleasures – the pleasure of eating, cooking. And having cried every day for several months.
Elizabeth Medina is one of a growing number of people with lasting “anosmia” – an unrecognized and often underestimated disorder that has become one of the markers of the pandemic.
If a majority of people deprived of taste and smell by the coronavirus recover them in three, four weeks, “10 to 15%” lose them for months, explains Valentina Parma, psychologist at Temple University in Philadelphia, and member an international consortium of researchers, the GCCR, which was formed at the start of the pandemic to study this problem.
These troubles could now affect at least two million people in the United States, and more than 10 million worldwide, she said.
Taste and smell are often seen as less essential than sight or hearing. And even if they are key in socialization – “we choose our partners partly on their odors”, underlines Ms. Parma – their loss is often considered by doctors as less serious than other effects of “Covid long”.
Yet their disappearance is frequently accompanied not only by real nutritional problems, but also anxiety and even depression, says Valentina Parma.
Like other “anosmics”, Elizabeth Medina ended up finding solace and solidarity in a support group, organized by a hospital near her home.
Such groups have flourished on social networks: the AbScent association – formed in 2019 in Great Britain and whose notoriety exploded with the pandemic – saw the number of its members explode in one year, from 1,500 to more than 45,000 on its various platforms, according to its founder, Chrissi Kelly.
On the association’s Facebook page, the question that haunts Elizabeth Medina comes back like a refrain: “will I one day find taste and smell?” “
In fact, at this stage of knowledge, it is “very difficult to predict how things will develop”, says Valentina Parma.
We know, however, that an evolution of anosmia in “parosmia” – that is to say the false perception of odors, where one smells of garbage while snorting coffee, for example – is a good indicator of cure in the long term.
Or that exercising daily to “smell” several different smells – such as essential oils – is at this stage the only treatment recommended without reservation: it works in some 30% of cases, after three to six months of exercise, says the doctor. researcher.
” Hold on tight ! “
Faced with this uncertainty, some “old” anosmia, such as Chrissi Kelly from AbScent – who for a long time lost taste and smell after sinusitis in 2012, then lost them again with the Covid – or Katie Boateng, an American who suffered from it. has been private since 2009 – have become near-celebrities. Sharing their experience, pushing the medical community to recognize the seriousness of these symptoms and to intensify research.
Katie Boateng created in 2018 the “Smell Podcast”, a mine of information and advice for her companions in misfortune. And is now part of a group of patients – the Patient Advocacy Group – which helps guide the research of the GCCR consortium.
Although she no longer hopes to be cured, “I still hope that we can guide research that will cure people in the future,” she says.
While waiting for research to advance, many are forced to exercise daily scents – sometimes with the help of a “coach”, like Leah Holzel: this culinary expert, who had lost the sense of smell from 2016 to 2019, has, since the start of the pandemic, guided six novices of anosmia in the rediscovery of scents.
And to keep morale up, many are hanging on to the healing messages that sometimes appear on social media.
“It’s been almost exactly a year since I lost taste and smell, and now I’ve pretty much recovered,” wrote this week on AbScent’s Facebook page Dominika Uhrakova, 26, from England. “It’s been long and painful and this group has helped me not to go mad … Hold on, don’t give up hope, good luck everyone! ”