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Living with a rare lung condition

Fran lives with aspergilloma, a form of aspergillosis. In this blog, she shares her experience of living with a rare lung condition and what she’d like to change in the future. 

For Rare Disease Day, I wanted to share my experience of living with a rare lung disease, aspergillosis. The first thing that comes to my mind is the general lack of awareness and support across health and social care organisations, let alone the general public.

I was diagnosed with aspergillosis in the summer of 1998. I’ve come to realise how very lucky I was to have received a correct diagnosis at my local hospital and to have been followed and supported at every turn. Yes, every turn!

What COVID-19 has meant for my rare condition

Aspergillosis is a rare condition caused by breathing in aspergillus mould. There are different types of aspergillosis, but most affect the lungs and cause breathing difficulties. Read more about aspergillosis on our health information pages.

The COVID-19 pandemic with its long period of shielding for clinically extremely vulnerable people has worsened my aspergilloma. I also have bronchiectasis, from which conversely I had no flare-ups in 2020, which is very different from previous years.

It’s difficult to know why my aspergilloma got worse during shielding, but this is often the case with a disease as diverse as aspergillosis. While I can describe how I self-manage my bronchiectasis I cannot do the same for aspergilloma. All I can do is quantify the amount of blood in my sputum when this happens and note down how often this happens. Which is of course extremely unpleasant and unsocial.

But I consider myself extremely privileged in having had excellent and sustained monitoring and support from my specialist for two decades.

We need GP records to accurately record diagnoses

Quite often people with rarer conditions are misdiagnosed with other respiratory conditions. But, far worse in my opinion, is that many GP records refuse to record my aspergillosis as a diagnosis, instead listing chronic obstructive pulmonary disease (COPD). What’s in a name? A lot, actually!

I live in between two hospitals, one which is my treating hospital and so has my correct list of diagnoses. The other does not, and so they simply refer to my GP records, which are incorrect. I always fear that an ambulance will take me to the ‘wrong’ hospital which will rely on my incorrect GP records, not see aspergillosis and will waste time looking for other causes. I have previously collapsed in the street unable to breathe and speak, but luck was on my side when ambulance took me to my treating hospital A&E.

If I could wave a magic wand and ask for one thing to benefit people with rare conditions, I would ask for all GP records to record hospital diagnoses accurately. It makes all the difference!

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25 February 2021