Aspergillosis is a rare condition so it is usual for a newly diagnosed person to never meet someone else with aspergillosis in the normal course of events. It is not unusual for a doctor to only have one or two cases in his or her list of patients! This can quickly cause feelings of isolation for the patient as they often have many questions that they do not feel they can bother their doctor with (indeed general doctors often do not know the answers to some of the questions) and have no-one who can truly empathise with their illness.
19 years ago (1998) the charity that helps fund this website (The Fungal Infection Trust) recognised this problem and began to develop communities for aspergillosis patients online. We now have the following:
- A thriving and steadily growing Facebook community (1200 members as of 2017) - this is an excellent collection of groups (Public, private and regional) that is free to join and is administered by a permanent member of staff from the National Aspergillosis Centre (NAC), an NHS specialist centre in Manchester, UK
- Question & Answer forum if you just want to ask one or two question of our medical staff
- Yahoo! group Aspergillosis Support which contains over 800 members from all over the world, many of whom have many decades of experience with aspergillosis in its different forms.
- Local support networks are offline face to face meetings with fellow patients & carers. Each group has a Facebook page. If you have no access to a computer or the internet we can put you in touch with the people who coordinate these groups - phone us on 0161 291 5866 or firstname.lastname@example.org
You can also attend or listen in to our monthly support meetings held at the National Aspergillosis Centre on the third friday of the month at 1pm for lunch, 1.30pm to start the meeting (all times BST or GMT). The meetings are recorded and cover a large range of topics so you can catch up on your topic of interest quite quickly.
Carers are a very important part of the team that support patients and we recognise that by also supporting carers.
You can learn a lot from reading the stories of many people who have written or spoken about their experiences with aspergillosis. Most are patients, some are carers and one or two doctors! Add your story too!