Last March, Kara VanGuilder took a sip of her morning coffee and nearly gagged. It tasted off — almost foul.
As the day went on, VanGuilder noticed that, in fact, nothing tasted right. Her mind flashed back to recent headlines about the emerging coronavirus epidemic in Europe and Asia and a new, unusual symptom that people were experiencing: the loss of taste and smell.
VanGuilder remembers the unsettling realization that came next. “Oh, my God. I think I have COVID,” she recalled thinking.
Sure enough, VanGuilder, a fellowship coordinator in the Division of Allergy and Clinical Immunology, was diagnosed with COVID-19 in early March 2020, just days before the World Health Organization declared a pandemic. Soon after, VanGuilder completely lost her sense of taste and smell — a phenomenon known as anosmia. Even after recovering from other symptoms, she couldn’t smell or taste anything for two months.
One year later, VanGuilder has regained only about 50 percent of both senses. In addition to her decreased sense of taste and smell, she now experiences phantom odors, such as natural gas, which has caused her to worry there’s a gas leak in her apartment. Meanwhile, certain tastes and smells still don’t sit right. Foods she used to enjoy, such as chocolate and peanut butter, taste rancid.
“It’s lowered my quality of life,” VanGuilder said. “I definitely took my senses of smell and taste for granted until I lost them.”
Anosmia is now regarded as one of COVID-19’s most common — and puzzling — symptoms, with scientists still struggling to understand its causes, why it only affects some people with COVID-19 and why some regain their senses quickly while others never recover them.
Inspired by an unexpected connection with a colleague-turned-patient, one Brigham allergist and researcher is working to solve the mystery behind this perplexing and often distressing symptom.
An Unexpected Link
When she isn’t caring for patients at the Allergy and Clinical Immunology clinic at 850 Boylston St., Lora Bankova, MD, studies the relationship between allergies and inflammation at the Jeff and Penny Vinik Center for Allergic Disease Research in the Hale Building for Transformative Medicine.
Prior to the pandemic, Bankova had begun investigating how exposure to allergens affected the olfactory mucosa — a small region in upper nasal cavity that contains the cells responsible for our sense of smell.
“We were thinking eventually of looking into how viruses affect this region, but then COVID hit and, all of a sudden, we were seeing a virus that caused people to profoundly lose their sense of smell very abruptly,” Bankova said. “As the months went on, we started realizing that not everybody gets their sense of smell back right away — that for some people it’s partial recovery, where they recover 20 to 30 percent fairly rapidly and then very slowly their sense of smell comes back. But there are some rare people out there who, six months or almost a year later, still haven’t fully recovered their sense of smell.”
Bankova happens to work just steps away from one of those rare people living with long-term, post-COVID anosmia: VanGuilder, who has an office next door to Bankova’s in the Hale building.
It wasn’t long before the two started chatting about VanGuilder’s personal experiences with anosmia — first as casual conversations between officemates and, eventually, as doctor and patient in the clinic.
The alignment between Bankova’s own research interests and the evolving pandemic, as well as an unexpected personal connection, stimulated both her curiosity and compassion.
Inspired to dig deeper into the mysteries surrounding post-COVID anosmia, Bankova and her research colleagues recently launched a clinical trial that will look at the differences in olfactory mucosa cells of people with and without post-COVID anosmia. The team hopes to understand why some people regain their sense of smell and/or taste and uncover any biological clues that may point to a potential treatment.
For a scientist who never envisioned herself conducting human studies, Bankova says launching this trial was an unexpected career twist.
“I always imagined that the way I would be a physician-scientist is by talking to patients, becoming interested in a clinical question and then conducting mouse studies to find the answer from a mechanistic standpoint,” Bankova said. “I think that if it wasn’t for Kara, I probably still would’ve just been intrigued by this problem and read a lot about it. Between this personal connection and it being the right time, in terms of where my research was headed, I felt an additional motivation to get this study going.”
Exploring the Mystery
A large part of what makes this area ripe for investigation is that there are still so many unknowns surrounding post-COVID anosmia, Bankova said.
“As a patient, you never want to be the ‘interesting’ patient,” she said. “But as a scientist, it’s always exciting to work on a mystery. For most things in medicine, we can come up with some hypothesis for why something might be happening, and we don’t have a very good one yet here.”
When people lose their sense of smell, Bankova explained, there often are three explanations: inflammation usually manifested as congestion, trauma that has damaged the olfactory mucosa or a defect of the signaling from the olfactory mucosa to the brain. None of those is clearly present in people with COVID-19.
One challenging aspect of studying post-COVID anosmia is that it can be difficult to access the area of the nose that’s responsible for our sense of smell, Bankova added.
“It’s very high up in the nose, and in humans it’s a tiny, tiny little area,” she explained. “Most studies that have looked into COVID in the nose so far have been doing nasal swabs in the part of the nose that conducts air, but not the part that’s responsible for our sense of smell.”
For their trial, Bankova and her team will provide study participants with sponges to collect nasal fluids and compare how those samples change over time in three groups: people who lost and regained their sense of smell and/or taste, people who continue to experience post-COVID anosmia and healthy individuals who never had COVID-19. The team will also use specialized swabs that can comfortably reach the olfactory mucosa, collect cells from that area and then conduct genetic sequencing to better understand the differences in those cells between the three groups.
While the trial is just getting started, VanGuilder said she is excited to enroll as a participant and remains optimistic that science will point to a solution.
“I believe that Dr. Bankova’s work is going to be transformative,” she said. “Maybe one day I’ll wake up and coffee will taste great again. In the meantime, I’m staying hopeful.”