On a hot summer morning in New York a few years ago, Jacob LaMendola, then in his late 20s, smelled chocolate for the first time. As far as he could tell, it was the first time he had felt anything. Already.
“I cried because I knew what it was,” he says. “It was chocolate. “
LaMendola suffers from anosmia, or a complete inability to detect odors. On that memorable morning, the 32-year-old Brooklyn filmmaker was standing near a Union Square chocolate factory when he was overwhelmed by the certainty that he was finally and inexplicably living this mysterious thing that others called him. smell – not only in his imagination, but in his body.
“Something in my brain just got it,” he says. “It was incredible. I would go back to see if I could smell it again, but it never happened. “
LaMendola is pretty sure he was born with the condition, although he didn’t fully realize it until around the fifth year. Small clues have started to add up. When his classmates laughed at a farting kid in the cafeteria, he didn’t understand the joke. When a friend from the camp put cologne on LaMendola’s wrist and told her that the smell would help her have daughters, the suggestion made no sense.
For LaMendola, anosmia is a familiar and accepted part of shipping around the world – generally “not that bad,” he says. But others find their lives dramatically turned upside down when they suddenly lose their sense of smell due to head trauma, nasal tumors, radiation or viral infections. Growing anecdotal evidence suggests that patients with COVID-19 fall into the latter category.
Although millions of people around the world cannot smell, those who work in the field of olfactory disorders say that anosmia is not as well known and understood as loss of sight and hearing, and in some cases, it is neglected or ignored by health professionals. The condition however receives increased attention in the middle of the Coronavirus pandemic.
In Germany, at least two out of three COVID-19 confirmed patients suffer from anosmia, according to a joint statement by Claire Hopkins of the British Rhinological Society and Nirmal Kumar, president of ENT UK, a professional body representing surgeons of the ear, nose and throat. In South Korea, 30% of patients who tested positive had anosmia as the main symptom with otherwise mild cases.
The increase in the number of COVID-19 patients reporting temporary odor loss is so large that in some countries, such as France, patients who experience sudden loss of smell are diagnosed with COVID-19 – without even being tested. AbScent, a British organization that aims to raise awareness of odor loss, now posts the following message at the top of its home page: “AbScent advises that if you experience sudden odor loss, you should immediately put quarantined for at least seven days. “
Scientists in Italy, Iran and Iceland are already producing studies on the phenomenon. Researchers at the Weizmann Institute of Science in Israel and the Edith Wolfson Medical Center have even developed an online platform, SmellTracker, which allows visitors to measure their perception of odors. The five-minute test uses common household products like toothpaste and vinegar to detect the first signs of COVID-19. The tool identified potential cases of coronavirus that were later confirmed, the researchers report.
But what is it like not being able to smell the freshly cut grass, coffee, hand lotion, skunk, that distinct smell of a new car? British University of East Anglia study published late last year in Clinical Otolaryngology found that odor loss can disrupt almost every aspect of life, from practice to emotion .
“I have lost many of the emotional spikes in life’s experiences – less joy, less excitement,” said Duncan Boak, whose smell disappeared in 2005 as a result of a brain injury. Boak founded Fifth Sense, a UK charity for people affected by sense of smell and taste who is part of the Global Chemosensory Research Consortium which explores the links between COVID-19 and smell loss.
More obviously, anosmia has an impact on taste, some describing a bluntness so dramatic that it is like going from living in color to living in black and white. Anosmia can lead to personal hygiene insecurity and fears of not being able to detect potential hazards such as smoke or gas leaks.
“It affects people’s ability to feel safe in their own home,” says Dr. Zara Patel, associate professor of otolaryngology and director of endoscopic skull surgery at Stanford University Medical Center, who treated many patients with this disease.
It can also decrease sexual intimacy and jeopardize personal relationships.
“People will tell me that they have long wanted to feel their husband or wife again, as they did before,” says Patel, “or they just want to be able to feel their child. “
In a short documentary by LaMendola titled Anosmia, a dad with the condition nostalgically imagines what his son feels: “I think he smells good, and like a child. I would like to know. “
When a virus intercepts the smell
The concept of smell can be difficult to describe even for those who do not have odor problems. It is esoteric and personal, linked to memories of people, places and experiences that evoke joy, sorrow and desire.
Yet despite all its mystery, the smell works scientifically. When you take a puff, an odor molecule stimulates nerve cells high up in your nose. Cells send an electrical signal to the olfactory bulb, a structure at the base of your forebrain that extends to the roof of the nasal cavity. The bulb then relays the signal to other areas of the brain for further processing.
Sometimes part of this system malfunctions, causing anosmia or hyposmia, reduced odor.
Post-viral anosmia is one of the main causes of odor loss in adults, accounting for up to 40% of cases, according to the British Rhinological Society. It is not yet known how many COVID-19 patients have experienced it or whether it will cause lasting impairment. For now, scientists can only trust anecdotes and extrapolate from the odor loss associated with colds and flu.
“The majority should see healing in a few days or weeks, a smaller subset of weeks in months … and the smallest group will only see partial healing or anosmia or permanent hyposmia,” says Steven Munger, director from the Center for Smell at the University of Florida. and taste.
There are a number of hypotheses for which some COVID-19 patients lose their sense of smell. The favored theory, says Munger, is that the virus targets non-neural cells, such as glandular cells, in the olfactory epithelium, the nasal tissue involved in smell.
“This could potentially lead to processes like inflammation that disrupt the overall ability to detect odors or send this odor information to the brain effectively,” he said. This is a theory that Harvard scientists are advancing in a new study, submitted to the bioRxiv filing on March 28, which has not yet been peer reviewed.
LaMendola, who has lived odorlessly all her life, never thought illness was a threat. Until the coronavirus crisis. “I thought I might not know early on that I was sick,” he said. “I was a little concerned that I didn’t know right away. “
According to Patel of Stanford University, there are a number of factors that determine how well the odor can come back, including the cause of the loss, the age of the patient, and how quickly treatment is sought.
“The sooner they can see a specialist like me for some form of treatment, the better the chance that we can help them,” she says.
The most successful treatment, says Patel, is something called olfactory training, which is like home physical therapy aimed at reconditioning the brain’s ability to smell. A doctor like Patel recommends sniffing specific scents – usually twice a day for up to six months, for about 15 seconds per odor. Scents vary by patient, but Patel usually starts with the rose, clove, lemon and eucalyptus.
“What’s important is that people focus on their memory of the smell,” she said. “This seems to be a very important part of this training process, because the olfactory cortex is right next to the memory center in the brain and it can be very useful in recreating this correct path to the cortex. “
Anyone who has smelled the ocean and been transported to the summers of childhood at the beach or has felt an overwhelming wave of paternal love when smelling their deceased father’s sweaters knows how the connection between perfume and memory can to be powerful. Breaking this connection can be particularly troubling for those with anosmia.
“Bonfire night, Christmas smells, scents and people – it’s all gone,” says Carl Philpott of Norwich Medical School, one of the researchers from the University of East Anglia study. , in a research summary. “People who have lost their sense of smell miss all those memories that smell can evoke. “
Memories triggered by odors are also one of the pieces that LaMendola misses the most, even if he can only imagine what they are feeling. “When someone talks about feeling something that reminds them of a memory,” he says, “it’s the most special part I have ever known. “
Hope amidst losses
Previous research has shown that people who have lost their sense of smell report high rates of depression, anxiety, isolation and interpersonal difficulties. “It had a significant impact on relationships with partners,” said the founder of Fifth Sense Boak. “There is a gap that is difficult to close, a disconnect. “
For the University of East Anglia study, scientists interviewed 71 participants aged 31 to 80 who contacted the Smell and Taste Clinic at James Paget University Hospital in the United Kingdom. The researchers conducted their study in collaboration with the charity Fifth Sense and found that the widespread effects of odor loss were compounded by a lack of awareness of the disorder among clinicians.
Dawn Millard, whose daughter Abi, 15, was born without smell, remembers years of feeling lonely and misunderstood as she struggled to find doctors who could diagnose and help her child. Dawn began to suspect that something was wrong very early when Abi, as a toddler, did not react to any odor, intoxicating or horrible.
“The doctors didn’t know what to do,” recalls Millard, who lives in Dorset, England. “An ENT doctor said to me,” Well, if you were to lose your sense, it would be this one. A shocking comment to make to a child who lacks one of his senses … No one seemed to understand us or take us seriously. “
Eventually, she discovered Fifth Sense, which she credits ultimately with helping her daughter and her daughter feel heard and supported. Abi, who had an operation that temporarily gave her a 10% sense of smell, raised funds for the charity and shared her story at the Fifth Sense’s fifth anniversary conference.
“I will do my best to help anyone with this disease,” she says.
Boak found his own comfort in maneuvering the world without the feeling he once took for granted. One of them is cooking – although he may not appreciate much flavor, he experiences tastes and textures. “I really focus on harnessing my remaining sensory abilities,” he says.
He also gets his goal from educating the world on a condition he thinks too few have heard of. And the connection of knowing others who suffer from it.
“One of the powerful things for me with starting the charity was meeting other people affected by odor disorders and sharing and learning,” said Boak. “It is so important to dealing with a loss that most people do not understand. “