Woman with long hair puts face close to candle with question mark label, her face and nose covered with black and white filter.

Do You Smell That? CF and Loss of Smell

There are so many wonderful (and gag-worthy) smells we experience in our day-to-day lives. Freshly baked cookies, a bouquet of roses, sunscreen on the beach, or a newly cut Christmas tree are a few of the most pleasant smells to meet your nose. On the other hand, a baby’s fresh diaper, overflowing garbage can, or unscooped litter box is enough to overwhelm you in disgust. Smells are just great, aren’t they? So great that we often take them for granted.

Do you smell that?

Who knew cystic fibrosis plays a role in one’s ability to smell? Certainly not me. It took me many years to realize I was missing part of my sense of smell due to CF over time. It was such a gradual desensitization that I hardly noticed it. When others would ask, “Do you smell that?” as I confusedly answered, “Umm, not really….” or “Nope” over and over again, I realized my smell wasn't normal. Now, I understand that hyposmia, or partial sense of smell, is a common experience in cystic fibrosis according to recent research.

Personal smelling abilities

Personally, I can smell certain scents, no problem--but they tend to be very strong or sickly sweet. When cooking, I need to stick my face very close to the pot to get a good whiff. The same goes for candles, lotions, etc. The closer to the source, the more likely I am to truly smell the scent. Even then, I find it difficult to pick out scents randomly unless someone points them out.

We always have a good laugh in group settings when family members will ask me if I can smell this or that. My general response, “I can imagine what it smells like!” Which is true! Our brain has a funny way of remembering smells, storing that information away, and filling in the gaps when we can’t.1

Hyposmia and anosmia in CF

In 2019, researchers conducted a study on cystic fibrosis and sense of smell using controls and people living with CF. They measured sinus health and smell with nasal endoscopy, “Sniffin’ sticks”, and corresponding questionnaires.2 One-hundred percent of CF participants were found to have chronic rhinosinusitis, inflammation of the sinuses.2,3

The researchers reported 81.60% of people interviewed with CF had hyposmia, or decreased sense of smell. In addition, 12.68% were anosmia, or no sense of smell. In comparison to controls with 18% hyposmia while none with anosmia.2 The results between controls and CF participants makes sense of smell a more significant issue in the cystic fibrosis community and could affect quality of life.

Causes of loss of smell

Similar to when you have a cold or sinus infection the inflammation or obstruction from mucus can make smelling difficult or nearly impossible. The same is true in CF--but in a more chronic fashion. Inflammation, nasal congestion, or nasal polyps are thought to be the cause of decreased ability to smell.2 Often antibiotics or saltwater nasal rinses as used as treatment to keep sinuses clear and without infection. Since smell plays a key role in the ability to taste and enjoy food, a poor sense of smell can have an effect on appetite, and ultimately, in quality of life.4

Has cystic fibrosis affected your sense of smell and/or taste? Tell us about your experience!

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