Could it be fungal? – Tom’s Aspergillosis journey
After years of recurring respiratory problems, many different diagnoses and unanswered questions, Tom was diagnosed with aspergillosis, a rare fungal lung diseases caused by the fungus Aspergillus fumigatus. Through sharing his experience, Tom hopes to raise awareness of fungal infections, encourage earlier diagnosis and help others facing similar challenges feel less alone. In this Q&A, he reflects on his route to diagnosis, living with aspergillosis, and the importance of asking: could this be a fungal infection?
What made you decide to take part in the Stories Behind the Science series?
I live with a complex mix of respiratory diseases – including aspergillosis – a rare fungal lung disease – about which there is huge lack of awareness and understanding among both the medical profession and the public.
It took several years of recurring respiratory issues before I got a diagnosis and even then, there was very little clear information given to me. Health permitting, I now avail of every opportunity to raise awareness. If sharing my story in this video helps even one person to have their illness diagnosed sooner, or feel less alone, then it’s worth it.
Who do you hope will watch your story, and why?
I hope my story will be seen by people in the healthcare profession as well as by people who have unresolved ongoing chest and sinus infections. These people may have aspergillosis that has never been checked. They may be spending time in damp and dusty environments or working with compost like I was, blissfully unaware that it may well be the cause of their unwelcome issues.
I hope that the medical profession might think and act a little bit sooner by checking – “could this be a fungal infection rather than a bacterial infection?”
What do you hope people take away from your story?
I hope people will have a better understanding of the impact of fungal disease on people. Like all things health related, early detection is key to improving outcomes as well as reducing the impact on lifestyle.
In turn, I hope it may indirectly lead to better understanding, better support, and better care for people living with aspergillosis, as well as their families – who know too well how debilitating it can be.
Finally, I hope that people will find some positivity in the story and appreciate the need for all of us to strive to stay in the moment rather than dwell on the unknown future.
What would you say to someone thinking about getting involved as a public collaborator in research?
If a person’s health allows, I would strongly encourage getting involved in research related to their specific illness. Patient input is hugely beneficial and relevant to the outcomes of research.
Lived experience supports clinical research. My recent experience from attending the 2026 European Respiratory Congress as a representative of the Aspergillosis Patient Advisory Group from the European Lung Foundation is very positive in terms of collaboration with clinicians. Medical experts are keen to listen to the real-life experience of people who live with disease every day.
Find out more
Tom’s experience highlights the impact fungal diseases can have on people’s lives. If you’d like to learn more about aspergillosis, including diagnosis, treatment and support for patients and families, visit the National Aspergillosis Centre, Aspergillosis Trust and NHS websites.
You can also explore more stories on The Fungal Threat to hear from people affected by fungal diseases around the world and learn how sharing lived experience can help raise awareness, reduce stigma and improve care.
Discover how researchers at the MRC Centre for Medical Mycology are working with patients, communities and partners worldwide to improve the prevention, diagnosis and treatment of fungal diseases.