As you might already know, the first World Aspergillosis Day was held on the 1st Feb. This year’s theme was 'Caring for Carers' – we hoped that the day would help to highlight the incredible work that carers do, and encourage more carers to join the online aspergillosis community.
We were overwhelmed by the response to the day. Since the start of our promotion for World Aspergillosis Day, membership of our Facebook group for carers, friends and family of people with aspergillosis has almost doubled.
But we don’t want to stop there. Please continue to tell more people about this group, which can provide much needed support and community for anyone who helps a person with aspergillosis. In turn, we will try to produce and share more content specifically for carers, and our planned redesign of the NAC Patients’ website will feature both fresh and ‘refreshed’ articles with carers, friends and family in mind.
We weren’t alone in making the first World Aspergillosis Day a success. Everyone who shared or liked the video we made, or any of our other posts about the day on Facebook, has helped to raise awareness of aspergillosis and the people affected by it. We also received some beautifully written accounts of caring, which we shared on the World Aspergillosis Day website. These stories were all at once inspiring, heart-breaking and hopeful. Two of my favourite quotes are: ‘One thing I think we all have in common is that we undertake these roles out of love, not duty’ and ‘Education of the condition, awareness and self-care, are a carer’s essential tools’.
And it wasn’t just carers that contributed to the effort. Many people with aspergillosis spread the word about World Aspergillosis Day on Facebook. One member of our Aspergillosis Support group produced a thoughtful and honest video about aspergillosis, and Mike Chapman wrote a poignant poem on the subject of carers.
We’d like to expand our efforts for the World Aspergillosis Day 2019 – so if you have any ideas for activities, or a theme or focus for next year, please let us know.