Millions of ‘anosmics’ struggle with a lost sense of smell - The Buffalo News
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Millions of ‘anosmics’ struggle with a lost sense of smell

CHICAGO – Mimi Koberlein woke up one morning unable to smell the bacon her husband was frying for breakfast. Confused, she ran to the shower, grabbed her shampoo and inhaled deeply. Nothing. Two years later, Koberlein, 47, still can’t smell lemons, freshly cut grass, her three boys or any other fragrances of life. Diagnosed with anosmia, or smell loss, she has tried decongestants, nasal irrigation, oral steroids and acupuncture. But nothing has worked.

Without scented cues to guide her, Koberlein said she now feels anxious about personal hygiene, frequently changing her clothes on hot days. She often forgets to eat, throws away perfectly good food in case it has spoiled and puts up with remarks about how “great” it must be not to have to smell stinky feet or dog poop.

Smell is often considered the most expendable of the five senses, the one people often say they would sacrifice if forced to give one up. But the olfactory system is far from dispensable; it warns about gas leaks or smoke and makes food and drink palatable. Smells communicate information, connect us to the environment and play a vital role in emotions and mood, arousal, memory and quality of life.

There are no evidence-based preventive measures, interventions or treatment options for smell disorders and fewer scientists in taste and smell research than in other fields, according to the National Institutes of Health.

That leaves anosmics – and there are millions of them – on their own as they struggle with a life upended by a disability few understand.

Anosmics report higher levels of depression, anxiety and social isolation. Eating and drinking become difficult; they lose their appetite; they have trouble cooking; and they gain or lose weight. They also frequently describe themselves as “frustrated,” “disconnected,” “missing out on something” and “lost,” according to published studies.

Sufferers seek validation – or at the very least some empathy – but the condition is often trivialized. They sometimes receive disinterested, rude or callous “help” from doctors and are subjected to “smell tests” by disbelieving friends and family or strangers, according to interviews and published surveys.

‘Eh, that’s weird’

“I feel a little bit like a freak show,” said Koberlein of Redwood City, Calif., who has lost 30 pounds since her sense of smell vanished. “If a person loses any other sense, there are fundraising drives, public education or awareness campaigns — at least some sympathy for the situation. With anosmia, it’s just, ‘eh, that’s weird,’ and people move on. For those of us who suffer from it, a big piece of our life experiences are gone.”

At least 6.3 million Americans report problems with their sense of smell, a figure that is likely underestimated because many people aren’t aware of their problem until it’s severe or because doctors fail to perform adequate tests, according to the National Institute on Deafness and Other Communication Disorders.

Standardized olfactory tests have been available since the mid-1980s, but very few physicians use them, making it difficult to track the number of people affected.

The prevalence of smell loss increases dramatically with age, affecting more men than women. Smell disorders also can be caused by a physical blockage, viruses associated with the common cold, head trauma and exposure to toxins.

Evidence of smell and taste disorders in association with other health problems is also increasing, according to the National Institute. People with early stage Alzheimer’s disease, nongenetic forms of Parkinson’s and polycystic kidney disease all report a reduced sense of smell. In addition, about 3 percent of those with olfactory disorders were born without the ability to smell.

Even though there have been no breakthroughs in treatments, some smell and taste clinics boast about outright cures or measurable improvements for their patients. But claims of cures are “unfortunate and misleading,” said olfactory researcher Richard Doty, director of the University of Pennsylvania’s Smell and Taste Center.

“Every hope is false hope,” said Andreas Keller, a research associate at The Rockefeller University, who has studied the hidden consequences of olfactory dysfunction. “There’s not much we can tell people.”

‘Nothing we can do’

At the Monell Chemical Senses Center in Philadelphia, where scientists conduct basic research on taste and smell, staffers regularly receive desperate emails from people who have lost their sense of smell and want advice on treatment. “All we can say is, ‘I’m sorry, there’s nothing we can do,’  ” said Leslie Stein, Monell’s director of science communications.

Jack Hickey, 68, who lost his sense of smell four years ago after a viral infection, wasn’t satisfied with that answer. Frustrated, he fired off a challenge. “If Monell doesn’t lead the way in this area, who will?” Hickey wrote in an email to Monell Director Gary Beauchamp.

Beauchamp, in a thoughtful three-page letter, explained the hurdles – including the absence of public interest and funding to support research in the field – and invited Hickey to meet with him. The result was the seed money for the Monell Anosmia Project, a research and advocacy program, made possible by a six-figure donation from Hickey and his wife.

“There are millions of people who suffer from this, and I think Monell has a chance to do something in the next eight to 10 years,” Hickey said.

Though he missed the new-baby smell of his first grandchild, “you count your blessings,” he said. “But if I could just enjoy chocolate ice cream or one cold beer again – that’s what I’m looking for.”

The chemical senses of smell and taste, the oldest from an evolutionary perspective, interact with each other to produce flavor sensations. The loss of smell affects flavor, significantly affecting the dining experience. (Those with smell loss, however, still can often detect the five basic tastes – sweet, sour, salty, bitter and savory – along with spicy.)

Odors are created when objects in the environment release molecules. These molecules stimulate specialized sensory cells called olfactory neurons, which are found in a small patch of tissue high inside the nose, between the eyes. Once the neurons detect the molecules they send messages to the brain, which identifies the smell.

Jennifer Leigh, 40, who lost her sense of smell in her early 20s, underwent two sinus surgeries to help with breathing and hearing problems caused by sinusitis. Her smell returned for several months after each surgery but then vanished again.

“It bums me out if I think about it,” said Leigh, of Evanston, Ill. “I didn’t get the baby smell with my kids, and I eat food really spicy to give it a taste.”

One night she heard someone pounding on her door in the middle of the night. A neighbor had smelled gas and alerted the gas company, which detected it under her door. Leigh didn’t realize the burner on the stove hadn’t fully clicked off.

“With three senses (smell, taste and hearing) affected, in some ways, I do feel it is similar to a disability,” she said. “I’ve had to adjust to being closed off in some ways.”

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