We will be launching the day at the 8th Advances Against Aspergillosis 2018.
Each year we will choose a different theme and this year it is ‘Caring for carers‘ as we believe that aspergillosis makes massive impacts on the lives of spouses, partners, and families. Chronic aspergillosis (CAP & ABPA) is incurable but is manageable so that a patient can live a long life after diagnosis. It is also debilitating preventing many from carrying out activities many of us take for granted such as housework, walking far, travel and holidays abroad.
If patients are no longer able to play their full part in family life then everyone else in the family has to adjust and that is obviously very hard for everyone involved. Carers & families have to take on roles that they never considered, make adjustments to their lifestyles that they don’t want to and often have to work much harder than usual with far fewer breaks. The emotional toll is severe and loneliness common.
Carers in the UK can sometimes get breaks from caring and other important support via CarersUK. The National Aspergillosis Centre also provides support in the form of a Facebook group dedicated to carers of people with aspergillosis – our aim for this awareness day is to boost membership of this Facebook group as much as possible. Once we have an active group we can all learn so much from each other.