Newsletter July 2017

Support Meetings at NAC

Everyone who uses the clinics at the National Aspergillosis Centre has a lung disease, some of which may be due to a malfunction of their immune system or the structure of their lungs. In order to study those differences and to try to find out how to correct those differences we need to be able to experiment on lungs. There is some work we can do using patient volunteers  and there are mouse model systems that can be used to reproduce some aspergillosis symptoms  but of course both have their limitations – we cannot risk the heath of our patients and mice tend not to be able to tell us how they are feeling!

 A research group in Innsbruck, Austria is making significant progress in the development of artificially reproduced lung tissue in the laboratory. Parul Chandorkar is visiting our group here in Manchester from that institute and gave us an amazing talk on the progress made in Innsbruck reconstructing the lung tissue that lines our airways in plastic laboratory dishes. All features of the tissue are grown perfectly along with a simulated blood circulatory and immune system and they are now starting to experiment with what happens when they ‘infect’ the artificial tissue with Aspergillus spores.

The first thing that they noted was that the cells lining our airways can grab hold of spores and absorb them – not something that has been seen before. They can now add in components of the normal immune system and watch as they find the spores and destroy them.

The next stage may well be to use donated human airways cells from aspergillosis patients and watch how those cells deal with Aspergillus infection. If they act differently to cells from people who have not got aspergillosis it could not only tell us what some of the problems are in aspergillosis patients airways but also provide us with a system to test how we can start to solve those problems – and all without harming a single patient or animal.

Graham Atherton then started the process of our group setting up a listing of patient priorities for use by doctors and scientists throughout Europe. We are starting by identifying the gaps in finding, diagnosing and treating people with aspergillosis – once we find the gaps, be they gaps of information, awareness, facilities, diagnostic or drugs, or anything else – we can raise these with the largest patient support organisation covering all of europe. The gaps are identified by patients and carers, we need your help to do this. Once identified we will circulate a list of gaps for everyone to prioritise.

Watch recordings of this and other meeting on your smartphone or PC at http://www.nacpatients.org.uk/monthly_meetings  

Our latest FACEBOOK LIVE session at the July Patients Meeting failed badly due to events outside of our control. Facebook couldn't reliably run the video stream - this measn it isn't going to be much use for our sessions. We have found a replacement and will run another streamed session this month (4th August) that will run on our Facebook pages https://www.facebook.com/groups/aspergillussupport/ on the day at 1:30pm.

NOTE: To stay in touch of any changes to the meeting at short notice we have a mobile phone text-based update system that can provide instant updates and reminders. If you wish to be added to the list we contact send your mobile number to admin@aspergillus.org.uk, or text 07796 908395 .

Weekly SKYPE meeting 

We are launching a new series of online meetings for patients & carers that will exclusively take place using SKYPE. Lasting for one hour each will be at 11am GMT on every Thursday. Everyone is welcome - all you will need is a computer or phone and click on this link https://join.skype.com/m0B3kQbBEpjM  

New articles on the NAC Patients website

 

 

There was a request that we provide copies of all our leaflets in future meetings, so if you want to look at them ask a member of staff at clinic or come to our next meeting - though online viewers can see them on our website.

View the talks here (http://www.nacpatients.org.uk/monthly_meetings ).


Fundraising & Awareness for FIT www.fit.care

There have been 151 donations to the Fungal Infection Trust over the last 12 months with over £5000 donated thanks to our fantastic supporters. 


 

Agnes KayThere is a small team of fundraisers making greeting cards, ribbons and now Keyrings.

Our keyrings have been donated in memory of Robert Bedford and quite apart from being attractive and colourful they also perform the useful - in some cases vital task of providing a reminder of the contact details of the National Aspergillosis Centre (NAC). If a patient were to be admitted to A&E in an emergency it is clear that the carrier of one of these keyrings is under specialist care and the medical team will be abe to contact our doctors if they need more information while treating the patient. Our Robert Bedford Keyrings are available during friday clinic at NAC and at patient meetings. We ask for a donation to FIT of £2.

Kirstie Fawbert completed a triathlon in memory of her mother, Jackie Cormie. Raised £1285

Run4Fun(gus) have also arranged eBay sales in aid of FIT - all proceeds will go to Fungal Infection Trust. If you have any items you could sell on eBay to raise funds then go to our charity profile on eBay to find out more.

Help support our fundraisers every step of the way – buy a ribbon, text ASPE14 £5 to 70070 or go to www.fit.care

Fungal Infection Trust ribbons are available at the WRVS tea bar in the National Aspergillosis Clinic all week. If you miss them when you visit more can be ordered from Jill at jill_fairweather23@yahoo.com Guide price £1 each. NB Jill donates all cards to us so all of your £1 will go to the Fungal Infection Trust.

Next month

On August 4th the group will listen to a talk from a patient who has his food intake supplemented by a feeding tube passed into his stomach. This is an option for some of our patients who struggle to put weight on, or who find their medication difficult to take. Neil has offered to demonstrate the tube in use too.

Check your own drug interactions. There is a smartphone APP (Android or iPhone search for ‘Antifungal Interactions’) and you can check this online at www.antifungalinteractions.org. If you cannot access a computer let us know and bring your list of medications with you to your next clinic visit.

Car parking

On days when we have a meeting, you will be able to get a £3 ticket from myself to allow you to park as long as you like.

 

Parking for blue badge holders is free. Blue badge holders can park in any car park and when exiting should press the button to speak to security at the barrier. Most barriers now have a camera and you will be able to show your badge to security using it.

Parking for blue badge holders can be found in the following car parks:

  • Main Entrance
  • Main Outpatients
  • Heart Transplant
  • Laureate House
  • Maternity
  • Nightingale Centre
  • Paediatric Outpatients Department
  • New Cardio

View at home

View past talks here http://www.slideshare.net/GTAtherton/ or for a more recent talk go here (http://www.nacpatients.org.uk/monthly_meetings ).

Many more stories here

Diary (blog)

Keeping a diary is known to be very therapeutic and has several claimed health benefits. Consequently we would like to encourage you to keep a diary and have provided a system on this website to allow you to do that, automatically keeping all your thoughts in one place. Diaries are also known as 'blogs' on the World Wide Web - to access your blog-space you need to set up your own account (you can use your Facebook Account to do this). Also see this

Community booklet - for people who do not have a computer

This booklet is to be largely produced by patients & carers with help from NAC (National Aspergillosis Centre) and the hope is that the patients community will use this facility to improve their social support networks as and when it is needed. We are going to need help from more patients with content – so if you have a point about how aspergillosis effects your life and that of your family (patient or carer), or you have a need/suggestion for information or support let us know and we can discuss what we can do about it (patients or the NAC team) at our next support meeting. Send suggestions to us at admin@aspergillus.org.uk or phone 0161 291 5866.

Check your own drug interactions​

Patients & carers who are taking antifungal medication can now check their own list of medication for adverse effects (side effects)  that are caused in combination with antifungal drugs. There is a smartphone APP (Android or iPhone search for ‘Antifungal Interactions’) and you can also check this online at http://www.antifungalinteractions.org 

If you cannot access a computer let us know and bring your list of medications with you to your next clinic visit.

National Aspergillosis Centre Annual Report

Learn more about what we have done over the last 12 months by reading this document.

Side effects

Apart from our drug interaction checker you might find it interesting to try this http://www.genderedreactions.com/

It sorts common drug interactions and side effects of medications as reported by gender. Just enter a brand or generic name.

Damp & Health

Living in a damp home? Read our new website pages.

Online Communities

Reaching new people is of fundamental importance to our need to reach people who may be living with aspergillosis and not be supported or occasionally even diagnosed correctly.
 
Facebook is one way to contact those people - Facebook Support group. Amongst lots of social chat recent discussions in this group centre around recent research into allergies and precautions to take when living in a heatwave.
Watch and listen to our support meetings at NAC live and ask the speaker questions via our text chat facility, or watch recordings – all while you are at home anywhere in the world http://www.nacpatients.org.uk/monthly_meetings
 

Local Support Meetings

Local Support Groups (Phone 0161 291 5866 for more information)

East Anglia Support Group: Contact Tina Schwartz sandts30@gmail.com
South Wales Support Group: Contact Valerie Davies at https://www.facebook.com/groups/ALSGSouthWales

Scotland: Francis Gallagher fcag2001@gmail.com Contact Francis for more information.

West Yorkshire Support Group : If you are interested in helping form this group please contact Lin Holding-Denton at admin@aspergillus.org.uk

Liverpool Support Group:  Meet at "WEATHERSPOONS", Childwall Fiveways Hotel, Queens Drive, Liverpool, L15 6XS. Contact Brenda Winslade sarah.mua@outlook.com

London Support Group: Meet at Google UK, London, United. Contact Bart Govaert  bart.govaert@btinternet.com

West Midlands Support Group: Meet at  Dudley Golf Club, Turners Hill, Rowley Regis. Contact Jean Jones jjbirkdale@gmail.com

East Midlands Support Group: Meet at  Wetherspoons in Rushden, Northamptonshire, on the first Tuesday of the month at 10.30am. Contact Kate Montali kate.montali@yahoo.co.uk

Bristol Support Group: Contact Ann & Keith James  ann.and.keith@btinternet.com

Volunteers are needed to help set up more Local Support Meetings for people wherever they live in the UK (and beyond) email admin@aspergillus.org.uk, or leave a message on 0161 291 5866.