A new diagnosis of aspergillosis can make you feel scared and isolated. You probably have many questions and not enough time with your consultant to have them all answered. As time goes on you might find it comforting to talk to other patients who ‘get it’ rather than just relying on partners, friends and family.
Peer support is an invaluable tool when you are diagnosed with a rare disease like aspergillosis. It can help you realise you are not alone and provides an understanding environment to express feelings and concerns. Many patients who attend our support groups have been living with the disease for a long time, and they often share their experiences and personal tips for living with aspergillosis.
– Weekly Teams Meetings
– Monthly Teams Meeting
– Facebook Support Groups
– CPA Research Volunteers
– Telegram
We host weekly Teams calls with around 4-8 patients and a member of NAC staff each week. You can use a computer/laptop or phone/tablet to join the video call. They are free, closed-captioned and everyone is welcome. It is a fantastic opportunity to chat with other patients, carers and NAC staff. These meetings run every Tuesday 2-3pm and every Thursday 10-11am.
Clicking the infographics below will take you to the eventbrite page for our meetings, select any date, click tickets then register using your email. You will then be emailed the Teams link and password which you can use for all our weekly meetings.
On the first Friday of every month there is a more formal Teams meeting for aspergillosis patients and carers run by staff at he National Aspergillosis Centre. This meeting lasts from 1-3pm and involves presentations on a variety of topics and we invite discussions/questions from patients and carers.
National Aspergillosis Centre Support (UK)
This support group, created by the National Aspergillosis Centre CARES team, has over 2000 members and is a safe place to meet and talk to other people with aspergillosis.
CPA Research Volunteers
The National Aspergillosis Centre (Manchester, UK) needs patient & carer volunteers with Chronic Pulmonary Aspergillosis to support its research projects now and into the future. This not just about donating some blood in the clinic, it is also about involving yourself in all aspects of our research – see https://www.manchesterbrc.nihr.ac.uk/public-and-patients/ We are now in a world where we will not get some of our funding without having patients & carers involved at all stages. If we DO have active patients groups it makes our funding applications more successful. Help us get more funding by joining this group. At the moment we only need patients & carers from UK to volunteer, but everyone can join as in the future this might change. We are already working with Skype so that we can talk regularly with volunteers from all parts of the UK.
Telegram
We understand not everyone wants to use social media, and we want to include those people in the support we pride ourselves on providing.
Telegram is very similar to other messaging apps, particularly WhatsApp. Still, it allows for privacy in group chats (unlike other messaging apps) because you can hide your number, preventing unsolicited contact from people outside the group. In addition, this app is available on IOS, Android, and via a web browser. It is simple to install, and there is no complicated onboarding process.
Telegram for general questions, peer support and the relaying of helpful information. If there is a clinical question related directly to a patient under our care at NAC, we ask that those questions be directed to official channels such as email or telephone.
More information can be found about Telegram and how to download via https://telegram.org/
If you want to join us, install the app and send a message to @lauren_NAC or @Graham_NAC, and we will add you to the relevant group.