Millions living with an invisible disease doctors now compare to stroke and Parkinson's

Losing one's sense of smell is just as "devastating" as experiencing a stroke or living with Parkinson's disease, research conducted by the University of East Anglia has revealed.

The study examined how disorders affecting smell and taste impact quality of life and mental well-being, finding the consequences rival those of several serious medical conditions.

Approximately one in five individuals suffers from these sensory impairments, yet medical research has historically neglected the area.

Physicians have often failed to treat such disorders as serious or lasting conditions, leaving many patients without adequate support or recognition of their suffering.

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Among the 455 patients assessed in the research, the majority experienced depression or mood disturbances, with one in five reporting moderate, severe or extreme depressive symptoms.

Prof Carl Philpott, the lead researcher from UEA's Norwich medical school, described the "significant emotional, social and psychological suffering" endured by those affected.

"Perhaps most alarming was the fact that rates of depression and social withdrawal among people with smell and taste loss were repeatedly found to be high," he said.

Sufferers reported a "disturbing emotional numbness" that stripped daily activities of meaning.

Simple acts such as eating became purely functional exercises, devoid of the pleasure most take for granted.

Patients described meals becoming "bland, metallic or even repulsive," leading to significant weight fluctuations as some lost their appetite entirely, while others pursued increasingly sweet or intense flavours.

"Patients described loss of pleasure in food, difficulties socialising, heightened anxiety around personal safety, such as being unable to smell smoke or gas and a disturbing sense of emotional numbness," Prof Philpott explained.

The inability to detect hazards such as gas leaks or burning created persistent anxiety around personal safety.

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Social isolation proved another common consequence, with many withdrawing from gatherings where food and drink formed the centrepiece of interaction.

The Covid-19 pandemic brought widespread attention to anosmia and ageusia, as millions experienced these symptoms during infection.

While many recovered their senses, others were left with permanent damage or distorted perception, including parosmia, where ordinary smells become nauseating.

"But our work suggests Covid-19 merely exposed a problem that had existed for decades, one that medicine has been slow to take seriously," Prof Philpott said.

He called for improved recognition of these conditions alongside greater investment in specialist treatment centres.

"Better recognition, investment in specialist clinics, and greater research into treatments are urgently needed not as a matter of comfort, but of genuine health and wellbeing," he added.

The findings were published in the journal Clinical Otolaryngology.

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