Patient Stories
Thoughts on the Aspergillosis Journey Five Years On – November 2023
Alison Heckler ABPA I have written about the initial journey and diagnosis before, but the ongoing Journey occupies my thoughts these days. From a Lung/Aspergillosis/ Breathing perspective, now that we are coming into summer in New Zealand, I feel I’m doing ok,...
Living with CPA and ABPA
Gwynedd was formally diagnosed with CPA and ABPA at the National Aspergillosis Centre in 2012. Below she lists some of the symptoms she experiences and what she has found helpful in managing the conditions. These symptoms fluctuate and can be very insignificant until...
Aspergillosis and Depression: A Personal Reflection
Alison Heckler is from New Zealand, and she has Allergic Bronchopulmonary Aspergillosis (ABPA). Below is Alison's personal account of her recent experiences with aspergillosis and the impact it has had on her mental health. Physical and mental health go hand in...
Palliative Care – Not What You Might Think
Chronically ill people are occasionally asked to consider entering a period of receiving palliative care. Traditionally palliative care was equated with end of life care, so if you are offered palliative care it can be a daunting prospect and it is entirely natural to...
Sunflowers, self-advocacy and the cancer diagnosis that wasn’t: Marie’s aspergillosis story
In this podcast by My Rare Disease, Katy, the series founder, talks to Marie about her aspergillosis journey. Marie talks openly about dealing with the diagnostic odyssey, the emotional impact, the need for self-advocacy and trusting your gut instinct, and how she...
An aspergillosis diagnostic journey
Aspergillosis is a rare and debilitating fungal infection that is caused by aspergillus mould. This mould is found in many places, including soil, rotting leaves, compost, dust, and damp buildings. There are several variants of the disease, mostly affecting the lungs,...
Living with hyper-IgE syndrome and aspergillosis: patient video
The following content is reproduced from ERS Breathe Vol 15 Issue 4. Click here to view the original article. https://breathe.ersjournals.com/content/breathe/15/4/e131/DC1/embed/inline-supplementary-material-1.mp4?download=true In the above video, Sandra Hicks...
Rare disease spotlight: interview with an aspergillosis patient and consultant
In collaboration with Medics 4 Rare Diseases, the Barts and the London Immunology and Infectious Diseases society recently held a talk about aspergillosis. Fran Pearson, a patient diagnosed with the condition, and Dr Darius Armstrong, a consultant in Infectious...
Patient stories from World Aspergillosis Day
On World Aspergillosis Day (February 1st), the Aspergillosis Trust organised a whole host of activities and awareness campaigns, to mark the occasion. Alongside their very successful Selfie Campaign, and the poster that was displayed on London buses in the run up to...