Since doctors diagnosed her with the disease in 2012, Chrissi Kelly formed AbScent, a charity and support group for people with anosmia.
We spoke with Chrissi and Debbie Babbitt, an AbScent community member, before Anosmia Awareness Day (February 27), about the lack of information about the disorder and their goal to build a knowledge-based support network.
What is anosmia?
Anosmia is the failure of the full sense of smell. It typically results from a head injury, a nasal passage problem or a serious upper respiratory tract viral infection.
People are born without a sense of smell in rare cases, although doctors call the disease congenital anosmia.
Other forms of dysfunction for the odor 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 are our discussions with Chrissi (CK) and Debbie (DB).
They’re talking about the impact anosmia has had on their lives, and why there’s a reason to be hopeful.
What is the goal of AbScent?
CK: About 3 years ago I started AbScent, with the goal of promoting patient-driven approaches to odor loss treatment and management.
After a virus in 2012, I lost my sense of smell, and at that point, I had very few resources in terms of the disease. There was a shortage of scientifically established knowledge in the support groups I found on Facebook, and many of the proposed solutions were — on the wild side.
My EMT[ ear, nose, and throat specialist] told me about odor preparation, so I read up some of the published literature and it seemed very helpful. The problem was there was no established protocol, so I began experimenting on myself to find the best way.
I added essential oils to absorbent paper and then placed them in the bottom of the jar, and I found that they preserved their scent for longer by storing them in the refrigerator.
I was excited about this and wanted the information to be made available to as many people as possible, so I started a Facebook group and website with links to relevant studies and the latest scientifically backed up information.
People with chronic conditions are often left helpless and it was obvious to me that it was important to have discussions within the anosmia culture. This led me to start the charity AbScent.
The misinformation that was circulated online was a major concern for me. Most people argued with little or no scientific backing under studied hypotheses.
Not all loss of smell is the same, and for many reasons people may experience anosmia, including head injuries, chemotherapy, alcohol use and solvent exposure.
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 food relationship, induce overeating or anorexia and adversely affect their lives. Prof. Thomas Hummel from Germany is a world leader in odor dysfunction and he works alongside us on this project.
They also focus on research on the genetic basis of parosmia, and investigate why these foods make life so unpleasant to some people.
Dr. Jay Parker is a food chemist at Reading University,[ in the UK], and she has some ideas about this. She is currently investigating the constituent molecules that enter a person’s nose when they smell food, and the results of that will be released later this year.
What we are doing is of great international interest, and it should be remembered that all this came from listening to patients.
How did you develop anosmia?
DB: I had a bad upper respiratory infection[ URI] in March 2019 which my doctor said was a virus, so no antibiotics is prescribed. As I started to recover, I noticed that I could not taste my food and assumed that it was a temporary situation.
After the URI cleared up, though, I realized it was my sense of smell that had gone away. The stuff that you pick up on your tongue through your taste buds were all I could taste at the time: salt, honey, salty, spicy and umami.
I started to develop parosmia after 2 months of not smelling anything, which impaired my sense of smell and taste. This process lasted roughly 6 months, and was challenging.
The world smelled disgusting most of the time, and many foods were repulsive. I really struggled with the condition during this period.
I’ve started to get more flavor in my food over the past two months and can smell some things but not much.
I think I am in hyposmia now, or a slight loss of smell. There are still a lot of things that I just can not consume and eating a well-balanced diet is hard, but it undoubtedly improves.
CW: I have a history of sinus infections and various allergies— for example, I’m slightly allergic to dust mites — but in 2012, one sinus infection seemed to drive me over the edge. Then I overused a nasal spray which caused further damage.
Nasal sprays are very addictive, and if used for much more than 1 week, they always worsen or even cause further problems.
One of the main problems of anosmia is that it is impossible to work out what happens after the incident in a person’s nose weeks, which is usually the time a person first sees an EMT.
The harm has often been done by this point, and the loss of smell trickles into other places.
It can disturb the relationship between a person and food, cause anxiety about safety issues and cause a person to be self-conscious about body odor. That can also lead to intimacy issues.
I think that we need to strive for recovery and change rather than a full cure, because it is not an option to put things back together exactly as we were before.
How has the condition affected your lives?
DB: The taste and satisfaction of the meal is a part of feeling satiated from eating. I didn’t feel comfortable without flavour, so at first I was feeding more than I needed.
I kept searching for the food I was sure might “breakthrough” but that’s not how it works. So, I gained some weight and I’m not pleased 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.
For now, I have given up cooking, but I am hoping for recovery and a return to normal. If not, then I will have to adjust to a new normal.
CW: My love for color has greatly increased and when it comes to seeing nature, there’s an extra pleasure.
So many of us have depression, and my GP said, “You’re sad because you can’t taste food.” It’s not that easy though.
Our olfactory complex resides in the most important part of our brain — in the medulla— and that’s where stuff like our emotions and the instinct for war or flight are.
Your olfactory bulb can lose strength when you avoid smelling and this can correspond with feelings of depression. Similarly, people suffering from clinical depression may have reduced bulb ability.
We are constantly picking up smells at a subconscious level and since my scent has marginally improved, I find that the morning and night smell is different— as is the summer and autumn smell. These are things I didn’t consider before.
Are there any lifestyle changes that help?
DB: From the very beginning, I’ve been doing smell preparation, having discovered it through AbScent.
I made my own kits and practiced the essential oils at least 2–3 times daily for at least 6 months. I couldn’t smell a thing at first, but over time, I was able to smell all of them and tell them apart.
I went to an ENT which had recommended twice a day saline nasal rinsing with budesonide[ a steroid] added to the rinse. With any cell inflammation it is supposed to help maximize the benefits of the odor training. I’ve been doing that since August and I’m going to keep going for a full year.
I’ve learned about a vitamin A nasal oil through the AbScent Facebook community that is supposed to help with cell regeneration, but it’s so hard to know what’s helping outside of the smell training.
I also take alpha-lipoic acid daily, as this should help with regeneration of the nerves.
CW: Starting the smell training is so important, and I think that sense of smell is a better name for the process. It’s easy to get irritated when you lose your smell, and stop paying attention to your nose.
Smell perception occurs at a range of levels and it’s a sequence of brain processes. Memories and emotions are matched by the brain, which is why a smell can evoke a memory of your grandma’s kitchen — but it can’t help you remember a phone number.
A very important aspect of odor training is the top-down process. It’s a bit like being conscious in that it helps you to be really present in the smell.
It allows you to listen to the experience of your body at that moment, and wait for it to develop slowly if you don’t feel it instantly.
Recovering people always taste slowly, while a strong nasal immediately smells. The rewiring is different, and it takes longer, so the more likely you are to regain that smell when you smell something, and try to remember when you’ve been exposed to it before.
Smell preparation is similar to nose physiotherapy. In a total of 4 months, it must be performed twice a day. This takes time — and the question of compliance.
By completing the Sense of Smell Project questionnaire on our website, people can access the app we created. It takes only 10 minutes, and a individual will have full membership once completed.
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 [email protected].