Stories from other patients form an important part of patient support. Many people report that listening to or reading about someone else who has the same infection, and thinking about their experiences, helps them feel less alone as they come to terms with their own illness.
Carers are not forgotten, they are a very important group who also require support – in fact if we only supported patients we would be neglecting half of the people we need to help. Two of the videos below are given by carers.
On the 26th of March there will be a charity coffee morning held at Dudley Golf Club, in aid of The Aspergillosis Trust. Open to everyone, this event will include stalls selling a variety of goods, including handmade greetings cards, a raffle, and of course, refreshments! Further details can be seen on the poster below:
The NAC patient and carer support meeting is held on the first Friday of every month. The meeting is an opportunity to meet other aspergillosis patients and carers and listen to talks on a wide variety of different subjects. To watch previous meetings click here.
Where? Altounyan Suite, Wythenshawe Hospital
When? First Friday of every month 13:00-15:00 (refreshments from 12:30)
Who? NAC patients can attend in person, and anyone can watch and comment online
What? We usually have one main speaker, followed by updates on research and other news from the NAC communications team. There will also be refreshment breaks, so there is ample time to speak to other patients and carers, or staff. The main talk varies widely and can be anything from lifestyle and coping skills (eg. managing stress) to aspergillosis research updates. We will advertise the talks here a week ahead – if you’re more interested in some subjects than others you are more than welcome to just pop in for one talk!
Rare Disease Day falls on the last day of February every year. The day is an opportunity for patients and advocacy groups to campaign and raise awareness about rare diseases, such as aspergillosis. 1 in 20 people will live with a rare disease at some point in their lifetime, yet there are still huge challenges faced by those who do. Common problems include delays in diagnosis and difficulties accessing treatment and care – these problems may sound all too familiar to many aspergillosis patients. Click here to find out more about Rare Disease Day, and how you can get involved!
The Aspergillosis Trust is taking part in Rare Disease Day on social media. You can read other patients’ rare disease stories and share your own here to take part in Rare Disease Day. You can also read other aspergillosis patients’ stories on the Aspergillosis Trust website.
The Aspergillosis Trust have also added their logo (along with 90+ other patient organisations) to the open letter to the government asking for a review of the UK Rare Disease Strategy before 2020. You can read this letter here.