Chrissi Kelly founded AbScent, a charity and support group for people with anosmia, after doctors diagnosed her with the condition in 2012.
Ahead of Anosmia Awareness Day (February 27), we spoke with Chrissi, and Debbie Babbitt, a member of the AbScent community, about the lack of information surrounding the condition, and their mission to create a knowledge-based support network.
Anosmia is the complete loss of the sense of smell. It typically results from a head injury, a problem with the nasal passages, or a severe viral infection of the upper respiratory tract.
In rare cases, people are born without a sense of smell, doctors call this condition
Other types of smell dysfunction include:
- hyposmia,which is the partial loss of the sense of smell
- parosmia, which is when the perception of smells becomes distorted, so pleasant smells start to seem unpleasant, or an odor appears to change intensity
- phantosmia, which is when a person believes that they can smell something, but it is not actually there
Below is our discussion with Chrissi (CK) and Debbie (DB).
They talk about the effect that anosmia has had on their lives and why there’s reason to be hopeful going forward.
CK: I started AbScent about 3 years ago, with the aim of facilitating patient driven approaches to care and management of smell loss.
I lost my sense of smell after a virus in 2012, and, at that time, I found that there were very few resources regarding the condition. The support groups that I found on Facebook were lacking in scientifically established information, and many of the suggested remedies were — on the wild side.
My ENT [ear, nose, and throat specialist] told me about smell training, so I read up on some of the published literature, and it seemed very helpful. The issue was that there was no set protocol, so I started experimenting on myself to find the best method.
I was applying essential oils to absorbent paper inside small jars and keeping these out where I would remember to use them twice daily. The essential oil bottles are kept in the fridge, where they stay fresh for longer.
I was excited about this and wanted to make the information available to as many people as possible, so I started a Facebook group and a website with links to relevant research and the latest scientifically backed information.
People with chronic conditions are often left feeling powerless, and it was clear to me that having conversations within the anosmia community was valuable. This led to me starting the AbScent charity.
The misinformation circulating online was a huge concern to me. A lot of people were discussing under researched theories with little or no scientific backing.
Not all smell loss is the same, and people can develop anosmia for many reasons, including head injuries, chemotherapy, cocaine use, and exposure to solvents.
We have launched a Sense of Smell Project on the website, asking people questions about their condition. We’re collecting data on how people adapt to these changes with a particular focus on parosmia, where a smell can be so distorted that it causes actual harm.
This can interrupt a person’s relationship with food, causing overeating or anorexia, and affect their lives in a serious way. Prof. Thomas Hummel from Germany is a world leader in smell dysfunction, and he is working on this project alongside us.
We are also focusing on research into the molecular basis of parosmia, and looking at why these foods are making life so unbearable for some people.
Dr. Jane Parker is a food chemist at Reading University [in the United Kingdom], and she has some theories regarding this. She’s currently looking at the constituent molecules that enter a person’s nose when they smell food, and the results of this will be published later this year.
There’s a lot of international interest in what we’re doing, and it should be noted that all of this arose from listening to patients.
DB: In March, 2019, I got a bad upper respiratory infection [URI] that my doctor said was a virus, so no antibiotics were prescribed. As I began recovering, I noticed I couldn’t taste my food and assumed it was a temporary situation.
However, after the URI cleared up, I realized it was my sense of smell that was gone. At the time, all I could taste were the things you pick up on your tongue through your taste buds: salt, sweet, sour, spicy, and umami.
After 2 months of smelling nothing, I started to experience parosmia, which distorted my sense of smell and flavor. This phase lasted about 6 months and was very challenging.
The world smelled disgusting most of the time, and many foods were repulsive. I really struggled with the condition during this period.
In the past two months, I’ve started to get more flavor in my food and can smell some things, but not much.
I believe I am now in hyposmia, or partial smell loss. There are still many things I simply cannot eat, and it’s challenging to eat a well-balanced diet, but it’s definitely improving.
CW: I have a history of sinus infections and various allergies — I’m mildly allergic to dust mites, for example — but one sinus infection in 2012 seemed to push me over the edge. I then overused a nasal spray, causing further damage.
Nasal sprays are very addictive, and often exacerbate or even cause further problems if used for much longer than 1 week.
One of the main issues with anosmia is that it’s impossible to work out what’s gone on in a person’s nose weeks after the event, which is typically the time a person will first see an EMT.
By this point, the damage has often been done, and smell loss is trickling into other areas.
It can interrupt a person’s relationship with food, cause anxiety about safety issues, and cause a person to be self-conscious about body odor. This can also lead to issues with intimacy.
I think we need to aim for healing and improvement rather than a complete cure, as being put back together exactly like we were before is not an option.
DB: Part of feeling satiated from eating is the flavor and enjoyment of the meal. Without flavor, I wasn’t feeling satisfied and, at first, was eating more than I needed.
I kept searching for the food that I was sure could “breakthrough,” but that isn’t the way this works. So, I’ve gained a little weight, and I’m not happy about that.
I do worry about eating food that has gone bad and rely on my husband to taste things for me.
I can’t smell smoke or gas, so those are concerns, but I have smoke detectors and try not to be too paranoid about it.
I’ve given up cooking for now, but I’m hoping for recovery and a return to normal. If not, I’ll have to adapt to a new normal.
CW: My appreciation for color has greatly increased, and there is an additional joy when it comes to experiencing nature.
So many of us experience depression, and my GP said, “you’re depressed because you can’t taste food.” However, it’s not that simple.
Our olfactory complex is in the most central part of our brain — in the limbic system — and that’s where things, such as our emotions and the fight or flight instinct, are located.
When you stop smelling, your olfactory bulb will lose volume, and this can correlate with feelings of depression. Likewise, people who are clinically depressed can have reduced bulb volume.
We’re constantly picking up smells at a subconscious level, and since my smell has recovered slightly, I notice that the smell of morning and night is different — as is the smell of summer and autumn. These are things that I had not noticed before.
DB: I have been doing smell training since the very beginning, having discovered it through AbScent.
I made my own kits and, for at least 6 months, practiced with the essential oils at least 2–3 times each day. At first, I couldn’t smell a thing, but, over time, I became able to smell them all and tell them apart.
I went to an ENT who prescribed saline nasal rinsing twice a day with budesonide [a steroid] added to the rinse. It’s supposed to help with any cell inflammation to maximize the benefits of smell training. I’ve been doing that since August and will continue for a full year.
Through the AbScent Facebook community, I learned about a vitamin A nasal oil that is supposed to help with cell regeneration, but it’s so hard to know what is helping outside of the smell training.
I also take alpha-lipoic acid daily, as that is supposed to help with nerve regeneration.
CW: It is so important to start smell training, and I think smell awareness is a better name for the process. When you lose your smell, it is easy to become frustrated and stop paying attention to your nose.
Smell training works on a number of different levels, and it’s a cascade of brain processes. The brain matches smells to memories and emotions, which is why a smell can evoke a memory of your Grandma’s kitchen — but it can’t help you remember a phone number.
The top-down process is a really important aspect of smell training. It’s a little like mindfulness in that it teaches you to really be present in the smell.
It allows you to listen to your body’s experience at that moment and, if you don’t find anything immediately, to wait for it to develop slowly.
Recovering people often smell slowly, whereas a healthy nose smells instantly. The rewiring is different, and it takes longer, so when you smell something, and you try to remember when you’ve previously been exposed to it, the more likely you are to regain that smell.
Smell training is like physiotherapy for the nose. It has to be done twice a day for a minimum of 4 months. It takes patience — and compliance is a problem.
People can access the app that we’ve created by completing the Sense of Smell Project questionnaire on our website. It only takes 10 minutes, and once completed, a person will have full membership.
This data is essential in allowing us to discover more about how different people react to different smells.
I am always happy to speak with people, and if anyone has any questions for me, then they can contact me here.
The University of Reading, U.K., is looking to recruit more participants for the parosmia study we mention in this article. If this is something that interests you, then please email info@abscent.org.