July 29, 2021

What is nasal polyposis, this invisible disease that three out of four French people ignore?

Illustration of a woman breathing a flower. – Pixabay

  • According to an Ipsos survey for Sanofi Genzyme, 16% of French people have already lost their sense of smell.
  • If the Covid-19 caused a spotlight on anosmia, many French people suffer from other diseases that cause this total or partial loss of smell.
  • In particular, around 1 million French people who suffer from nasal polyposis, an invisible and unknown disease, which will benefit from a first awareness campaign on social networks from this Tuesday.

“I am blind from the nose”, summarize certain patients with nasal polyposis, which is characterized in particular by anosmia and loss of smell. This disease, invisible and unknown, will be the subject of a first awareness campaign from this Tuesday. Because according to Jean-Michel Maillart, president and founder of the association anosmie.org, at the origin of this mobilization with Sanofi Genzyme, France ignores everything about anosmia … and depreciates the sense of smell far too much.

Three in four French people do not know what nasal polyposis is

Before setting up this campaign, it was necessary to understand what these patients experience on a daily basis. Sanofi Genzyme and Ifop therefore conducted the first national survey, carried out on a sample of more than 3,000 French people, on nasal polyposis. Figures that 20 Minutes reveals exclusively.

Almost one in 6 French people questioned said they had already lost their sense of smell. The causes are varied: 17% mention a link with Covid-19, 64% lost it due to other diseases, 6% were born without a sense of smell, 5% lost it following an accident. And finally, 8% because of nasal polyposis. A disease that 3 out of 4 people have never heard of and which would affect around a million French people. However, only 50% of them would be diagnosed.

Hence the interest, with this campaign, of better informing caregivers and patients about this pathology, with the polypose-nasale.fr site and via the hashtag #SeSentirVivre on social networks. Especially since the impact on daily life is significant: six out of ten patients say that the disease has caused a deterioration in their mood (62%) and their psychological well-being (60%). “We realized that this disease, supposed to be benign, greatly affects the quality of life,” said Elsa Darnal, medical manager in immunology at Sanofi Genzyme and doctor. However, it is sometimes complicated to make the entourage – and even the doctor – understand how the symptoms have an impact. “

“I discovered the sense of smell when I lost it”

Anosmia, Jean-Michel Maillart speaks well about it. “What I miss most is the smell of my wife’s body and that of my sons when I kiss them,” sighs the quadra, who had an accident five years ago. I discovered smell when I lost it. We then understand the scientific, medical and societal void. Your nose is used to recognize spring, coffee, odors of danger, such as gas, fire, spoiled food. It is also losing access to all his memories. The smell of old laundry that takes you back to your grandmother, the scent of glue that reminds you of CE2. “

Jean-Michel Maillart has been suffering from anosmia after an accident for five years. He developed, with Sanofi Genzyme, an awareness campaign on nasal polyposis, characterized by anosmia. – anosmie.org

Losing your sense of smell is also in large part saying goodbye to taste, and therefore to the pleasures of the palate. “The taste buds, we have them,” explains Jean-Michel. But today, I eat sweet, salty, bitter or sour cardboard. Meals are no longer a moment of pleasure. It’s a shame, in the land of gastronomy. »And it can be a gateway to undernutrition and isolation, when dining with friends no longer makes your mouth water …

This sudden loss, some, infected with Covid-19, touched it quite brutally. “The French discovered smell in March 2020, which is a good thing for those with anosmia,” he continues. Since the health crisis, his association has also grown. “We worked on olfactory rehabilitation with a kit, to increase awareness of the sense of smell. “

Nasal polyposis, a disabling pathology

At public meetings on Thursday evenings, members of anosmie.org heard a lot about Covid-19. “But quickly, the subject of nasal polyposis imposed itself”, says the president. This is why Jean-Michel (who suffers from anosmia but nasal polyposis), has gradually become his spokesperson.

But nasal polyposis isn’t all about anosmia. The patients also suffer from nasal obstruction (therefore difficult to sleep, which causes a lot of fatigue), have a constantly runny nose, pain in the face. “To say that it is a nasal polyposis, these symptoms must last more than three months, specifies Elsa Darnal. And check, with a nasal endoscopy, whether or not there are polyps. That is to say, small growths, like grapes, in both nostrils, which block the sinuses ”. Another complication: “up to 50% of patients affected by nasal polyposis also suffer from asthma,” continues the doctor. When we have both, we have more severe forms of each of the pathologies. “

A therapeutic wandering

Pascaline has suffered from nasal polyposis for years. Having become a member of the association asnomie.org, she agreed to testify in video for this awareness campaign. “Of course I don’t take advantage of my little dishes,” she regrets in her kitchen, in the middle of preparing a plate of pasta. She had to wait two years to get a diagnosis. What seems to be common for these patients: if the disease often begins before the age of 30, its diagnosis by an ENT is generally later, between 40 and 50 years. A therapeutic wandering that deeply annoys Jean-Michel Maillart: “We are talking about people who could recover their sense of smell. It’s crazy when you know what you are deprived of! “

There are indeed treatments. “Corticosteroids sprayed into the nose can be effective for many patients,” reassures Elsa Darnal. When that is not enough, we give courses of oral corticosteroids. »Last option, surgery. Pascaline went twice on the billiard table. But after a few “magnificent” months, it was the “descent into hell”. And the return to the anosmic hut. “Recover your sense of smell completely and durably, cis possible, but not guaranteed, ”warns Elsa Darnal. Some patients therefore find themselves in a dead end, hoping one day to find the scents they lack.

Educate to smell?

Jean-Michel Maillart suggests the creation of a smell test at school, to make children aware “that this sense is precious, fragile, that we can also make it our profession. “