World Lung Day 2023: I have Aspergillosis - a chronic lung disease caused by mould and fungus found in dead leaves and rotting food

Since the life-changing diagnosis, in 2011, Lisa McNeil, has had to make radical changes to reduce the likelihood of her ingesting a common fungus, called Aspergillus.It’s found in soil, dead leaves, and crops - and thrives in damp weather. It makes it a nightmare for sufferers of the condition to be out in nature – especially in the autumn/winter months.

Damp falling leaves are a trigger

Lisa, 53, said: “I used to love holidaying in the Lake District, we’ve had to stop going as being around the grass and trees, especially with all the falling leaves, just makes me feel so unwell. It means no more walks in the woods, which I really miss”.

The chronic condition causes tenacious mucus production, breathlessness, wheezing and extreme fatigue.

Breathing in the aspergillus fungus is not harmful for healthy people, as they can breathe the spores back out. But it can cause serious problems for people with Aspergillosis – a group of conditions caused by the fungal spores.

"It’s in the air all the time, but if you’ve got a windy day then the wind will move the spores around. It’s also much worse in damp weather, when the leaves are decaying and get wet and soggy and blown about.

The retired project manager now spends her winters abroad, in Spain, to avoid her symptoms flaring up in the cold weather.

It’s one of the ways she adapted to live with her debilitating illness.

"A lot of us become a lot more poorly in the autumn, but once you know what you’ve got you can keep yourself away from the things that trigger your symptoms.”

Throw food before it starts to rot

While Lisa has not made any major dietary changes, she’s had to learn to take a lot more care to throw away food before it starts to rot.

Less-than-fresh fruit and vegetables, stale bread and black pepper are some of the common items that can cause issues.

"One of the worst triggers is when you have fruit that’s started to grow that powdery fungus on it, so I have to be really careful not to keep food too long. Black pepper is a no-no, unless it’s cooked first, because it’s full of aspergillus. When I was first diagnosed I became obsessed with making sure there was no black pepper left in the kitchen.”

Journey from diagnosis to acceptance

Lisa suffered a pulmonary embolism at 26, which left her vulnerable to infection and with a long-term condition called bronchiectasis, where airways of the lungs become widened.

After a severe bout of infection in 2011, Lisa was referred to Professor David Denning - an infectious diseases specialist in Manchester, who set her on the path to get the correct diagnosis.

Since then, she describes it as a ‘journey’ through fear, depression and eventually acceptance.

Keep a clean, damp-free home

The mold is also found in damp buildings, and even bedding. Lisa goes to great lengths to stop her home from becoming damp, and uses a special HEPA filter air purifier and hoover.

She also buys new pillows every three months, as recommended by Aspergillosis experts.

"I became a bit obsessed with cleaning at first and making sure there was no chance any mold could grow anywhere in the house. I’ve relaxed a lot now. I’ve found my new normal and accepted this is something I have to live with.”

There are other items that she’s had to bin around the home – including real Christmas trees, and fresh-cut flowers.

"If greenery brings you a lot of joy then don’t get rid of everything. You can have plants, but keep the soil covered up by stones, and if the leaves look like they are starting to die then cut them off. It can really affect your quality of life, you have to find a balance.”

A potentially fatal condition

Lisa is now the chair of the Aspergillosis Trust, and works with other patients and professionals to increase education and awareness for the condition.

Aspergillosis is a hidden lung disease that can be fatal. It is incurable but if diagnosed early and with the right treatment it can be managed.

For people who have weakened immune systems, breathing in spores can cause an infection in the lungs or sinuses which can spread to other parts of the body.

The term Aspergillosis covers a range of conditions. These are lifelong, fungal lung infections which are due to the fungus Aspergillus. These cause allergic reactions, making it difficult to breathe. They may cause lung damage (erosion of lung tissue/cavities) instead or as well.

Art exhibition will raise awareness for Aspergillosis

Hive Arts Blackpool and Aspergillosis Trust are raising awareness of the diseases caused by the fungus aspergillus as well as advocating for clean, fresh air to support good lung health. Air pollution remains the top risk to health in Europe and everybody is vulnerable.

The exhibition will be opened by Tina Rothery #nanasagainstfracking and there will be an events program including a nurse practioner offering free health checks, advice and help on stopping smoking and a talk from one of the countries leading experts on damp proofing your home.

‘The Air That I Breathe’ will be open to the public everyday from the 26th September until 9th October at HiveArtsAlternative Gallery 80-82 Church Street Blackpool FY1 1HP and entry is free.