BehindTheMedspeak: Anosmia

Losing your sense of smell can be catastrophic.

Anosmia, the medical term for the condition, is almost impossible to treat.

Last year's Nobel Prize for Medicine was awarded to Professor Richard Axel of Columbia University and Professor Linda Buck of the Fred Hutchinson Cancer Research Center for their discovery of a large gene family, made up of up to 1,000 different genes, controlling production of specialized protein receptors that create our sensation of smell and allow us to differentiate between up to 10,000 different odors.

Smell receptor cells are continually dying and being replaced by new cells that have to be wired up correctly in the brain.

Did someone just say "stem cells?"

Learn more about anosmia via the useful links here.

Paul Lukas wrote a very interesting article about anosmia; it appeared in this past Wednesday's New York Times Dining In section, and follows.

Failing the Sniff Test: The Nose, Ruined

Robert Weinstock doesn't remember the accident.

"It was Oct. 7, 2003, and I was going to get a prescription from my doctor," he recalled recently.

"It was just two blocks away, but I was running late, so I took my bicycle. I'd only been biking for about five seconds when I turned a corner. The next thing I remember is waking up in the hospital."

Mr. Weinstock, a 37-year-old illustrator and children's book author who lives in Greenwich Village, soon learned that he had been hit by a truck, resulting in a broken arm, hearing loss in one ear, spinal fluid leakage and a fractured skull.

He spent two weeks in the hospital, where he underwent two spinal taps and skull surgery.

Given the gravity of his injuries, Mr. Weinstock didn't worry too much about how his food was tasting.

"My mother was bringing me soup from some fancy market," he said, "and I realized at some point that it all tasted like chicken fat, schmaltz. I didn't say anything, because I figured there was just something off with the food."

But after he left the hospital, he realized the problem was wide-ranging.

"Coffee smelled a bit rank, anything with garlic tasted horrible - and I always loved garlic!" he said.

"Then I had mint chocolate chip ice cream, one of my favorite foods, and it tasted really chemical-y."

Mr. Weinstock was experiencing a loss of smell, or anosmia.

Because smell and taste are so closely related, anosmia patients usually complain first about food that doesn't taste right.

They find themselves in a world where they can no longer take for granted that chocolate will taste like chocolate, longtime favorites are suddenly unpleasant, and the parameters of good and bad flavor, or ripe and spoiled, become a guessing game.

A lifetime's worth of learned assumptions and preferences are sent back to square one.

"The taste buds can only detect sweet, sour, salty and bitter - the full symphony of flavor comes from the nose," said Dr. Charles P. Kimmelman, a Manhattan anosmia specialist.

"But when your brain is hit really hard, it wiggles like Jell-O, and the little fibers going from the smell nerve endings up to the brain are stretched taut. Some of them get torn, injured or bruised."

Can the damaged fibers regenerate?

"To a certain extent," Dr. Kimmelman said.

"But not necessarily along the same pathways they had before. It's like a crossed circuit. And there's usually a phantom sensation, like when a person loses a foot but still feels like his toe is hurting. The brain is trying to make sense of what little information it has coming in."

So some things may be perceived differently than they were before the injury, and others may not be perceived at all.

Dr. Kimmelman said that most anosmia patients recover only 20 to 30 percent of their sensory function, and that there is little doctors can do about it.

Anosmia may be caused not only by head trauma but also by upper respiratory infection, nasal or sinus disease and exposure to toxins.

Some people are born with the condition.

People from all these camps usually find their way to a Yahoo anosmia message board (health.groups.yahoo.com/group/anosmia) that has emerged as a popular support group.

Many anosmic people say the biggest challenge is in the kitchen.

"I wasn't a great cook to begin with, but with anosmia you can't tell when something's burning," said Lori Mesnik, a computer consultant from Edison, N.J., who suffered a head injury in December.

"One time I steamed some broccoli, and it wasn't until I cleaned up later that evening that I realized the water had boiled out and burned the Teflon from the inside of the pot."

Another common complaint: dealing with the frequent perception that compared with other disabilities, anosmia is no big deal.

"Most people treat me like a circus oddity," said Maria Topper, a school science coordinator from Oceanside, Calif., who became anosmic about two years ago, apparently because of allergies.

"They do not realize how much of a life-changing experience it is to lose these senses."

Mr. Weinstock initially played down his condition.

"At first my attitude was that I was grateful not to be a vegetable," he said.

"I thought, 'If this is the worst I have to deal with, that's fine.' But it did take a lot of the joy out of eating. It was deflating to bite into something and have it taste bad."

Because eating is such a social activity, he sometimes felt left out at dinner gatherings.

Restaurant outings became crapshoots at best, pointless extravagances at worst.

But the problems of this condition go beyond culinary inconvenience.

Anosmic patients may not be able to smell a gas leak or a fire, and they can unwittingly eat spoiled food.

Mr. Weinstock once handed a milk carton to his girlfriend, Dana Stevens, who poured milk in her coffee and discovered it had turned sour.

Mr. Weinstock, completely oblivious, had already finished his cereal.

Mr. Weinstock was eventually referred to Dr. Kimmelman, who gave him the University of Pennsylvania Smell Identification Test, considered the gold standard for assessing olfactory function (available from smelltest.com for $26.95; minimum order seven tests).

Mr. Weinstock initially thought he'd done "fairly well" on the test but was disappointed to hear that his score placed him among the bottom 5 percent of the population.

"That's when it began seeming more real," he said. "I realized this was going to be a problem."

Undaunted, Mr. Weinstock slowly began orienting himself to his reconfigured palate.

"Thai, Japanese and fruit were O.K., but almost anything else tasted off," he said.

"Anything with a sauce or a melding of flavors tasted muddy and schmaltzy. Processed foods like candy, soda and toothpaste were very chemical-y, almost astringent."

Ms. Stevens, a freelance journalist who occasionally writes film reviews for The New York Times, helped out by setting up blind taste tests for Mr. Weinstock.

She primarily used ice creams and sorbets, since they all had similar, neutral textures.

Slowly but steadily, Mr. Weinstock showed progress: At first he couldn't tell chocolate ice cream from vanilla, but later on he successfully distinguished between the relatively similar coffee and dulce de leche.

Both he and Ms. Stevens remember that as a milestone.

"My theory was that immersion therapy would help - lots of stimulus, lots of flavors," Ms. Stevens said.

"Besides, the alternative seemed so grim. At one point I found this anosmia web site where people posted messages like, 'There's more to food than flavor - there's still texture and color and temperature!' And that just seemed depressing, like, 'Ah, here's a red cube, and it's tepid, oh boy!' The taste tests made me feel like we were working on something, making progress."

Whatever the impetus, Mr. Weinstock's taste sense appears to have improved.

"I've definitely gotten better at eating things with garlic, especially cooked garlic," he said.

"In general, there are more things that taste good. And I'm better at understanding what tastes good and what doesn't."

At a Brooklyn cafe recently, he tucked into a lemon buttermilk soufflé with obvious gusto.

Although he estimates that he's recovered about 70 percent of his taste capacity, he concedes that this could simply be a matter of acclimating to his new sensory environs - after all, he initially thought he did well on the smell identification test, too.

Taste, it turns out, is a difficult thing to pin down.

"It's like asking a kid, 'Do you feel taller today?' " he said.

"Any changes have been happening so gradually that it's hard to tell. I've had more than a year to forget what it was that I lost."

One thing he hasn't forgotten: his old favorite, mint chocolate chip ice cream - or "mint chocolate R.I.P.," as he now calls it.

"I kept trying it, but eventually I gave up, because it became too dispiriting," he said.

His new favorite foods are blood orange juice and salad.

"And as sad as it may sound, vanilla may now be my favorite ice cream. It tastes very vanilla-y."



He paused, and then added: "Or at least how I remember vanilla tasting."