I am a bit late doing this but I had a bad start to my day.
As it is the first World Aspergillosis Day I thought I would write something about this horrendous illness. I have been inspired by someone who does volgs on You Tube regularly and has done one today. Please check them out Stewart Armstrong is his name.
There are different illnesses all stemming from the aspergillus spore I have Allergic Bronchial Pulmonary Aspergillosis and this has now developed in Chronic Pulmonary Aspergillosis. I have always had asthma which was described as allergic. In the 70’s it was diagnosed as ABPA which means my body gets an allergic reaction to the fungal spores which affect my breathing also little fungal plugs block the airways which in turn causes bronchiectasis (damage). I now suffer from permanent infections and cough up nasty solid black grey lumps from time to time which are the fungal plug. Chronic Pulmonary Aspergillosis, CPA, is where cavities have formed and fungal balls grow in them. My description is pretty basic but more information is available from the websites below.
Aspergillosis is regarded as rare but I have learnt today that approximately 1 million die of it every year. Perhaps that is not a lot when we think about the world population but it is still an incredible amount.
In my last blog I mentioned the conference which has started in Lisbon today AAA. I got the title wrong – it is Advances Against Aspergillosis. It is a 3 day event and this is the 8th year it has been running. Things are looking up with the treatment but there are still parts of the world that don’t really understand the illness and how to recognise it. Also there is a funding issue for some of the medications. It is a very frightening illness and totally life changing irrespective of dealing the politics that goes along with it.
Chronic illnesses take over your life. When I wake in the morning I take medication do nebulisers and physio on my lungs a few hours respite if I have the energy then it starts again. Not easy. My husband is my carer and I am grateful I have someone.
One thing and I think I have mentioned it before is that through this illness I have met some brilliant friends. Some are carers who have lost there loved ones to this illness and the others are fellow sufferers. We have a support group which is run my the National Aspergillosis Centre in Manchester and we can all have a moan and there is understanding.
Love and hugs everyone and keep well
For more information go to