Personal stories, experiences and creative work from people affected by aspergillosis.
Living with aspergillosis is different for every person. The experiences shared here are from patients, carers and family members who have chosen to describe part of that journey in their own words.
Some accounts describe the long path to diagnosis. Others are about treatment, uncertainty, everyday adaptations, caring for someone else, or finding ways to keep going. We also share patient-created poetry and other creative work.
Personal experiences, not medical advice
Every person’s health, treatment and response to illness are different. These accounts are shared for connection and understanding, not as a substitute for advice from your own healthcare team.
Explore Patient Voices
Diagnosis journeys
Stories of symptoms, investigations, being listened to, and finally receiving an aspergillosis diagnosis.
Living with aspergillosis
First-hand accounts of treatment, setbacks, practical adjustments, relationships, work, energy and the day-to-day realities of a long-term condition.
Carer and family voices
Experiences from the people who support someone living with aspergillosis, and the ways illness can affect a whole family.
Creative voices
Poetry and creative work written by patients and carers. These pieces are presented as the author created them.
Why shared experience matters
Rare and complex conditions can feel isolating. Reading another person’s account cannot tell you exactly what will happen to you, but it may help you feel less alone, find words for a difficult experience, or prepare questions for an appointment.
These accounts also help clinicians, researchers, families and friends understand the impact of aspergillosis beyond tests and treatments.
Sharing your story
If you are a patient, carer or family member and would like to share an experience, please speak to the National Aspergillosis Centre team. We will discuss what you would like to say, how you would like to be credited, and whether you are happy for your contribution to be published.
We only retain material where authorship and permission are clear. Some accounts have been lightly edited for clarity, length or privacy; poetry and creative work are not rewritten.
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