Sense of Smell & AERD (Samter's Triad)
“Nothing revives the past so completely as a smell that was once associated with it.”
It's Worse Than It Sounds
Aspirin Exacerbated Respiratory Disease impacts quality of life in many ways. According to Scripps patient survey, 97% of AERD (Samter's Triad) patients report having a decreased sense of smell (hyposmia) or an absent sense of smell (anosmia). 39% of patients say it is the symptom that most affects their quality of life.
Our sense of smell alerts us to dangers like gas leaks, smoke, and rotten food. There's a reason why we find the smells of decaying food, raw sewage, and ammonia repulsive – it is our body telling us to avoid these things because they will harm us. 22% of AERD patients report feeling unsafe, because they can't detect smoke or fumes. Make sure you have a working smoke detector!
Enjoyment of Food
Most importantly for many of us, our ability to taste food is dependent on our sense of smell. Those with anosmia (a complete loss of smell), may only be able to detect the saltiness, bitterness, or sweetness of foods, but lack the ability to appreciate any of the flavors that make eating so enjoyable. This can result in appetite disturbance, causing either weight loss or gain. Some eat more because they never feel satiated - others lose interest in eating entirely.
Memory and Emotion
Smells are strongly associated with memory formation and play an underappreciated role in social interaction. Many AERD (Samter's Triad) patients feel a profound sense of loss at not being able to trigger pleasant memories through scent. Those with a normal sense of smell can easily think of aromas that evoke such memories - the smell of a child or lover, cookies freshly baked by our grandmother, or the scent of an orchard where we once had a picnic. To lose the sense of smell is is to lose a rich and emotionally powerful way of experiencing the world.
Our ability to smell is also important when it comes to romantic attraction. Research has shown that our body odor, produced by the genes which make up our immune system, guide us subconsciously to choose our partners.
To make matters worse, there are professions where having a keen sense of smell is absolutely essential - chefs, firefighters, and health and safety inspectors - to name a few.
What You Can Do
19% of AERD patients report a total loss of smell that is not helped by any treatment. For the rest of us, our sense of smell fades in and out, depending on a variety of factors. Here are some things that might help:
Sense of smell may return after surgery, but sometimes only for a brief time.
Aspirin desensitization improves sense of smell for a majority of patients.
A leukotriene modifying drug, like Singulair or Zyflo, may help. Zyflo (zileuton) appears to be more effective than Singulair for improving sense of smell. One study found that patients taking Zyflo experienced " a remarkable return of smell."
Oral steroids are often effective, but they can have serious side effects when used at high doses or for a long period of time.
Nasal sprays alone are unlikely to have a significant impact, but many report that rinsing with budesonide respules results in improvement.
Diet modification may help symptoms for some people.
Most of us are able to see some improvement with the right combination of treatments. Visit the Forum or the Facebook Samter's Society Support Group to find out what works for others!
Health and Safety for Anosmiacs
Make sure you have a working smoke detector. You may also wish to purchase a natural gas detector. If purchasing a new oven, consider switching to electric. Otherwise, make sure to have your natural gas appliances serviced regularly.
Read the expiration dates on your food – if there is any possibility it’s gone bad, throw it away or have someone else give it a sniff! Stick a label on your leftovers, so you remember how old they are.
Only use chemicals, like household cleaning supplies, in well-ventilated areas. You may not be able to detect the fumes.
Wash your clothing after every use, or get someone else to check it for you. Keep your deodorant somewhere where you'll never forget to use it.
Sense of smell can also alert you to problems with your car, so make sure to get a regular tune-up.
If you’ve lost interest in food, set a timer so that you remember to eat regularly. Explore different foods and cooking techniques. Texture and color can enhance a flavorless meal. Focus on the ingredients you can taste – saltiness, bitterness, and sweetness.