Patients meeting July 2018
|Beth Bradshaw||Wallet/purse card, new point-of-care diagnostics, new wellness initiative|
|Graham Atherton||Dust study, heatwave notifications, Aspergillosis Trust, Red Cross, new Patients website|
|Click here to view meeting/Alternate version/Facebook recording|
Due to a last minute cancellation we had to change our program with little notice, but we dont think you can see the joins in what we talked about!
Beth again led the way and told us about progress with the wallet/purse information card designed for patients to carry in case of emergency, or just in cases where they need to be able to explain what aspergillosis is! She then moved on to a stunning new development in diagnostics that has just emerged. Diagnosing acute invasive aspergillosis needs to be completed as quickly as possible in order for treatment to begin so that the patent has the best possible chance of the best outcome. There are several barriers to this happening – some tests take a long time to run, others have to be done in batches dur to the high expence involved and still others need highly skilled operation and interpretation. If only there were simple devices on which we could spot a drop of blood and get a yes/no result in a few minutes. Well now there are! Two companies IMMY and OLM diagnostics have developed lateral flow devices (most people will be familiar with this technology used for home pregnancy testing) that will detect a fungal infection in 30 mins at the bedside. Simple to use, interpret and store these deveices are valuable additions to the clinicians toolkit.
Intended for acute invasive aspergillosis this technology may see more uses in the future, possibly including screening for chronic fungal infections such as ABPA.
Last month Prof Malcolm Richardson launched a new project to be carried out in his department (The Mycology Reference Centre Manchester which is closely attached to NAC). They are going to look at the microbes that are found in the homes of people who have aspergillosis (i.e. the home’s microbiome). If successful we might well be able to establish a link between the microbes in peoples homes and aspergillosis.
We still need more samples so if you have aspergillosis please send us some dust – for further instructions and a kit send your postal address and aspergillosis type to email@example.com.
Graham Atherton also spoke of the new patients advocacy group Aspergillosis Trust that is collecting ‘selfies’ of celebrities to support research and awareness of aspergillosis. If you know a celebrity, let them know.
We are also about to begin the redesign of the patients website we need your help!
Hot weather – heatwave alerts from NHS England
https://www.blf.org.uk/British Lung Foundation website