CHARLOTTE, N.C. (WBTV) - An England-based nonprofit that focuses on smell disorders is providing support and information to people suffering from smell and taste loss and distortion after COVID-19.
AbScent is a nonprofit registered in England and Wales. It was founded in 2019 before the COVID-19 pandemic. Founder Chrissi Kelly says the group provides support and gathers research on smell and taste disorders that are caused by viral infections, head trauma, and other diseases.
“Before COVID came along, we were an unseen, unheard group of people in a very small Facebook group,” Kelly said.
She estimates about 60 percent of people who suffer from COVID-19 have symptoms effecting their smell or taste. Since the pandemic, she says their Facebook support groups have gotten much larger as people seek help.
AbScent has four different support groups that focus on different types of smell loss. One group is specifically for COVID-19 smell loss, another group is for smell losses caused by other ailments, a third group is for kids suffering from COVID smell loss, and the last group is for people suffering from parosmia.
Parosmia is a smell disorder in which a person’s senses of smell and taste are distorted.
“It is impossible to describe it accurately,” Kelly said of parosmia. “We hear that over and over in our support groups, that nobody understands.”
Isolated is exactly how Sophia Phillips felt when she noticed things were tasting and smelling differently.
“It was just like this weird underlying chemical taste and smell,” Phillips described. “I was just like this is weird, ew.”
Phillips lost her sense of smell and taste when she contracted COVID-19 in November 2020. She says she began to regain her senses within a month or two, but that’s when she noticed her senses were coming back distorted.
Phillips is able to stomach the chemical-like taste and smell, but Kelly says others have it much worse.
“Some people will say it smells like sewage, it smells like rotting meat, it smells like the bottom of the garbage pail,” Kelly described. “The most foul and disgusting thing you can think of.”
Kelly says parosmia is still a mystery. But she says researchers describe it as part of the recovery in fully regaining your senses of smell and taste. Kelly says some people will lose their sense of smell or taste after COVID because of sinus blockages and congestion, but the virus may also cause damage to the olfactory nerves. She says damaged nerves, results in a garbled message sent to the brain.
“Imagine a cup of coffee with most of the receptor knocked out,” Kelly said. “What’s left is a very strange olfactory experience.”
While the sensation is odd, and sometimes funny to those who have not experienced it themselves, Phillips and Kelly say it can cause a lot of distress. Kelly says it can take months, sometimes longer for a person to get past the parosmia phase of recovery.
“It seems like it’s just a problem with the nose, but it’s a mental health problem, it’s a diet problem, it gets into all aspects of your life,” Kelly said.
She says severe cases of parosmia can cause constant nausea. Some people lose weight because they cannot eat.
Phillips says her case of parosmia has not gotten to that point, but it has caused her mental health to suffer.
“It’s scary and isolating,” Phillips said. “It’s like having an invisible disability. Like losing your arm or your leg, but nobody can see it. And when you try to tell people about it, they go ‘haha [laughing] that’s weird’, but they don’t take it seriously.”
Phillips says she has suffered from several panic attacks since struggling with parosmia. She has joined some of AbScent’s support groups online to connect with others feeling the same way.
She says she doesn’t know when her senses will be fully recovered, but she is hanging on to others’ stories of success while she waits.
“I’ve seen people recover after eleven months, so I have faith,” Phillips said.
For more information about Abscent, click here: https://abscent.org/