Respiratory Articles

Why did you set up AbScent? What is your story? 

I lost my sense of smell in 2012. I didn’t find the resources I needed, so I created what I thought would be helpful for someone in my position.

How did losing your smell affect your lifestyle?

Losing your sense of smell can change your life profoundly. It affects everything, not just your experiences with food. You suffer a bereavement that seeps into all aspects of your life and drains away even the simplest of pleasures. 

Have you adapted to living with a smell disorder?

I have adapted to life fully. My sense of smell had fully recovered to the point where I had a full quality of life. Unfortunately, I got Covid and further damage was done to my sense of smell. 

How difficult was it for you to seek help for your smell disorder? Did this drive you to help others?

Seeking help was not the problem. I looked high and low and there was very little information out there. Although new research was being published online whilst I was looking for information, no one had taken the initiative to make it available to patients.  

Why are smell and taste disorders neglected in care and research settings?

Traditionally, there are very few treatments and doctors feel at a loss when they try to help patients with smell disorders. When doctors have no convenient interventions or advice, they don’t pay attention to the problem. Now because of Covid 19, loss of smell is in the spotlight and we are finally getting the attention we need.

Have care opportunities increased for those with smell disorders over recent years? Why do you think that this is?

I still think care opportunities are lacking, but everything takes time. As a patient advocacy organisation, we can act quickly and respond to the needs of the community on a day to day basis. Whereas, scientific research takes a long time. From collecting data, taking the time to process it, getting it through peer-review then publication, it’s a long process and this is what is needed to change the way doctors manage patients! So we are able to fill the gap with peer support and signposting to the latest news in our health area. 

How has covid-19 affected the way that people perceive smell disorders? Has this been detrimental or beneficial?

The more people that are affected by a certain condition, the more publicity it gets. The sheer number of journalists affected by smell loss means there has been more coverage of it in the popular press over the last year. It is getting much more attention! 

What is olfactory training and how does it work?

Olfactory training is a supportive technique that can help hasten recovery from smell loss. Like stroke rehab, it is based on the way the brain interprets smells. You have to smell the same scents daily for a minimum of four months. There is loads of evidence to show that it improves outcomes for patients. However, many people misunderstand it and give up much too soon. You won’t learn to play the piano in a few days! So it really takes practice.

What are your top three tips for managing recovery from a smell condition?

• Learn everything you can about your condition. Now that the information is out there, make use of it!
• Make sure you follow your doctor’s instructions and learn the correct techniques for using sprays, drops, or rinse bottles.
• Smell training!

If you need some extra support for your respiratory health, our talkrespiratory hub is always open!