In order to make our research as strong as possible we want to involve any doctor in the US who is involved with the diagnosis and treatment of aspergillosis. Patients and carers can help us by passing on our details in an email to all of your doctors, including a link to a survey asking for their contact details. The more we get the better!
Please copy & paste the following to your clinical team – more than one if you have them, specialist or general doctor.
Dear [Your doctors name]
The National Aspergillosis Centre (NAC) in Manchester UK is one of the foremost research centres in the world studying all forms of chronic aspergillosis (eg CPA, ABPA, SAFS, Aspergillus bronchitis, aspergilloma) and was the first centre recognised by the European Confederation of Medical Mycology (ECMM) and a Centre of Excellence.
Run by Director Professor David Denning, we would like to be able to contact clinicians in the US who are involved in diagnosing and treating aspergillosis, so that we can help involve you in our research programs. Only by working together can we improve diagnostics and antifungal medication for this chronic infection.
The Irish Lung Fibrosis Association has produced an hour-long video, which takes viewers through yoga exercises suitable for patients with lung fibrosis and other respiratory conditions. Exercise is key to a healthy lifestyle, and can improve quality of life in those who suffer from lung conditions. If you struggle to stand, the first half of the video is devoted to exercises that can be done sitting in a chair.
Further information about exercising with aspergillosis:
A recent article published in the Daily Mail includes an interview with 2 aspergillosis patients, both founders of the Aspergillosis Trust. The piece covers the debilitating symptoms that fungal infections can cause and highlights the growing problem of antifungal resistance throughout the world. The Daily Mail article was followed by a piece in The Times, covering many of the same issues. Articles about aspergillosis being published in such major newspapers represents a significant step in the fight to raise awareness amongst the public about such a rare and little-known disease.
Mental health amongst university students could be improved by introducing mindfulness training. These are the findings from the first UK study, published in Education Research International, to measure the efficacy of mindfulness based cognitive therapy (MBCT)on students.
At this month’s patient support meeting Phil Langridge, Specialist
Physiotherapist at Manchester University NHS Foundation Trust, Wythenshawe
Hospital, gave a fantastic talk all about spirometry and lung function tests.
He started the talk with a simple question “Do you look
forward to lung function tests?” An audience member offered a simple reply “No,
Lung function tests are hard. The thing is, they’re maximum function tests. The staff carrying out the tests sometimes sound a bit strict, firmly telling you to keep going and put more effort in. The tests are tough, and for some people they can take a while to recover from. That’s because they need maximum effort and it can take a lot out of some people.
Phil gave us an overview of most commonly used tests, starting with the spirometry test. Sometimes these tests can be done at your GP surgery with a practice nurse in a familiar setting. Sometimes they have to be done in hospital and this can lack privacy and be a bit intimidating. Try not to worry, staff understand this, just tell them you’re feeling nervous and they’ll do what they can to help so your test gives the best result possible.