World Aspergillosis Day falls on the 1st February each year. The event was first proposed by a group of patients at the National Aspergillosis Centre in Manchester, UK to raise awareness about all forms of Aspergillus infection and allergy. The inaugural day took place on the 1st February 2018 at the meeting for patients & carers at the Advances Against Aspergillosis meeting in Lisbon, Portugal.
Each year, patients, carers, clinicians and researchers come together to raise awareness and funds. The patients’ advocacy group, Aspergillosis Trust, produces an annual campaign video to explain the ongoing needs for research and novel treatments.
Watch their 2023 ‘Call to arms’:
Seminars and Education
As well as campaigning events, the National Aspergillosis Centre holds a seminar series and Q&A session for patients and experts. These recorded meetings allow patients, carers (and anyone else who may be interested) to learn more about the disease. From research breakthroughs to mould prevention, there are many different topics covered each year. These sessions also allow participants to interact with and learn more about the doctors, nurses, physiotherapists, researchers, laboratory staff and other experts working with both Aspergillus and aspergillosis.
The Role of Carers
The first ever World Aspergillosis Day aimed to promote support for those whose role is rarely acknowledged in the management of aspergillosis. In recognition of the spouses, partners, children, parents and many more who care for chronically ill people, we reproduce the words of Mike Chapman:
We are so often ill, our breath coming in gasps,
We fear for ourselves, plead for mercy,
Those breaths we take fight us with wheeze and rasp,
Our plight is hard; our mood is hard and grouchy.
But wait a moment; pause a minute, look around, do you see?
Those that love us, care for us, nurse us and stay by our side,
Those loved ones, siblings, partners or spouse, standing closely,
Holding our hand, mopping a brow, hiding how they cried.
So while we suffer, puff and pant, do not grumble, do not rant,
There is strength beside us, a hand to support, an ear to listen,
Our loved ones who watch us suffer without showing a tear,
Our life is hard, full of despair, but do we see the eye that glistens?
My wife is my rock, my oxygen mask, my faithful nurse,
I am lucky, I’m not alone, I have someone who cares,
Suffer we do, often it’s true, but don’t moan, don’t curse,
One of us is ill but both feel the pain, the suffering we share.
Friend or family, brother or son, husband or wife,
We all must remember those who hide their tear, hide their pain,
They sacrifice their hearts, to accompany us in our plight,
So keep in your hearts a smile, for those who love us, with nothing to gain.
Copyright ©MichaelKChapman 2014