“You know you’re missing out on an important aspect of the world that other people are perceiving,” he says. “It can create a sense of isolation.”
Think about never being able to smell your newborn baby, for example, or missing out on the role scents play in memory. Whenever Munger smells lighter fluid, he remembers his grandfather, who quit smoking when Munger was born, but never relinquished his Zippo.
If you lost your sense of smell, you’d also notice a big difference in flavor. To experience how smell affects flavor, hold your nose closed and eat a jelly bean. You’ll still taste sweetness, but you won’t be able to tell if it’s lime or orange. That’s because flavor isn’t just what you taste with your tongue, but what your nose and soft palate contribute. It’s why food doesn’t taste right when you have a cold, and why many people with smell disorders lose the pleasures of eating and drinking along with smell.
Despite the sweeping effects of smell disorders, people living with them don’t always know there’s a diagnosis for what they’re experiencing — or that others share similar symptoms.
Munger encountered this firsthand in 2015, when he did an AMA (“Ask Me Anything”) on the website Reddit. Of the 1,200-plus questions and comments that poured in, many were from people coping with smell loss, often in isolation. “I am stunned right now,” one commenter wrote. “I’ve gone my whole life without knowing this condition or meeting anyone else like me.”
A few of the thousands of comments from Munger's first Reddit AMA.
It’s something Munger sees often.
“A lot of people aren't believed when they say they can't taste or smell,” he said. “Parents sometimes think kids are making it up. And doctors don’t always know about smell disorders, because they’re not part of the regular medical curriculum.”
As part of the university’s academic health center, the UF Health Smell Disorders Program can make medical students aware of conditions like anosmia — a total lack of smell — and hyposmia, reduced sense of smell, along with parosmia, when things smell like something else, and phantosmia, which causes patients to perceive smells that aren’t there.
Unlike vision and hearing disorders, chemosensory disorders — those relating to taste and smell — aren’t noticeable to others. (Given their prevalence, you probably know someone who’s affected, even if you don’t realize it.) That invisibility doesn’t just hurt the individuals, it hurts the cause, Munger says, making it more difficult to build a community for support and advocacy. Some do exist, such as the U.K.-based charity Fifth Sense, Facebook support groups, and the subreddit r/anosmia, but they lack the prominence of other advocacy organizations.
“Groups representing people with vision loss and hearing loss go in front of Congress,” he said. “Chemosensory loss doesn't have that.”
After the AMA, Munger felt that lack keenly. “It really drove home to me that people are feeling lost and neglected,” he said. He and his colleagues at the center knew they needed to help build a community. The first step, they decided, was to get as many people as they could who cared about taste and smell disorders together in a room, so they did what academics do: They hosted an international conference.
More than 60 patients, scientists and advocates from around the world gathered in Gainesville for SmellTaste2017.
They learned the latest on smell research, got tips on working with their doctors, heard from anosmic chef Adam Cole and attended a beer tasting focused on mouthfeel.
Of all of the details he labored over for the conference, Munger was particularly proud of the catering. The conference team, including Fifth Sense founder Duncan Boak, had endeavored to create a menu that leaned heavily on sensations other than flavor for the taste- and smell-impaired attendees, with foods that emphasized chemical senses such as spiciness, as well as temperature and texture. (Leaning on texture is a time-tested strategy for anosmics, including Ben and Jerry’s founder Ben Cohen, who loaded his ice cream with chunks and ripples to great effect.)
The piece de resistance was dessert, including a cake frozen with liquid nitrogen and strawberries coated in chocolate and Pop Rocks.
“Unfortunately,” he said, “we found out that chocolate is a common trigger for some people with parosmia — it tastes like burned tires.”
He sighs. “There’s a lot we don’t know.”
For Munger, the conference — which will return to UF in 2019 — crystallized the need for a clinical program. People were suffering, often in isolation. But what could doctors do for them?
In cases where the patient’s nasal passages are inflamed or blocked, otolaryngologists can offer treatment. But even when no cure is available, Munger still believes the clinical program can help. It can connect them to other smell-disorder patients to lessen their isolation. It can help people share coping strategies. It can make the next generation of doctors more aware of these disorders, and maybe encourage some of them to specialize in treating or researching them. Some patients may decide to join studies to help develop treatments and cures, leveraging UF’s medical-research might. Already, center researcher Jeff Martens, chair of the Department of Pharmacology and Therapeutics, has developed a gene therapy for congenital anosmia that works in mice. Human trials could begin in the next few years.
In late September, UF Health announced the program and began taking inquiries from patients interested in appointments with Drs. John Harwick and Jeb Justice. Because the program is housed within UF Health’s Ear, Nose and Throat Specialties practice, any smell disorders appointments that aren’t booked simply open up for other ENT patients. After all, it’s hard to reach out to people who might not know they have a disorder, or realize that other people have it, too. But a month after the announcement, more than 40 potential patients had called.
“For some, we’ll have treatments. For many we won’t. We’re trying to be really clear about that,” Munger said. “But even for the patients who don’t have a treatment available immediately, we can help them make food more palatable, make their house safer and validate that this is a real impairment with real impacts. We can help them feel less alone.”