Fungus-afflicted gather in Rome for world’s first ever patient meeting

Submitted by Aspergillus Administrator on 3 February 2010

Today (03/02/10) will see the world’s first ever international gathering of patients affected by a devastating fungus – Aspergillosis. The meeting is taking place at the Sheraton Hotel, Rome alongside the ‘Advances Against Aspergillosis’ scientific meeting and will bring together patients, carers and clinical experts.

Aspergillosis is the scourge of leukaemia and transplant units and is affecting a growing number of people with asthma. It causes the formation of fungal balls in patient’s lungs and resistance to antifungal drugs is making it very difficult to treat some patients. Today’s meeting will allow some of the world’s leading experts to directly address and inform patients and their relatives.

Quote from Fran Stokes of grange over sands

“having been a patient of Wythenshawe since 1968,it’s important to see the changes that have taken place over the years so that patients have become full members of the therapeutic team and feel that their experiences are key to advances in treatment. Patients benefit greatly from education and information which they can then take back to the primary care sector. This why I travelled to Rome to participate in this excellent meeting.”

The meeting is being held jointly by the Fungal Research Trust and the UK’s National Aspergillosis Centre which is based in Wythenshawe Hospital, Manchester. The National Aspergillosis Centre has more than 300 patients who attend from all over the UK, including transplant patients, lung cancer and leukaemia survivors, many with asthma and cystic fibrosis and others with damaged lungs due to tuberculosis or sarcoidosis. The fungus responsible causes different effects in different patients, hence the need for an explanatory meeting.

Dr Geoff Scott, Chairman of the Fungal Research Trust, says; “We identified a significant gap in the provision of patient-friendly information some years ago. Managing aspergillus infections can be extremely complicated, and so a gathering of experts and patients, with a direct dialogue between the two, seemed the best way to address this. We are delighted to be able to host this first international patients meeting, having held prior such meetings in Manchester and London.”

Aspergillus infections are the leading infectious cause of death after stem cell transplantation (an increasingly common treatment for leukaemia and lymphoma). They can cause potentially deadly infections, debilitating forms of asthma and trigger severe allergic reactions. While they are not very common, these illnesses are often a very disappointing outcome of successful cancer treatment and transplantation and they are difficult to manage.
Cases of Aspergillus infection rise year on year as transplants become more common (the number of transplants overall roughly doubling every 10 years). Cases of severe asthma are increasingly being recognised as having a fungal element, more and more cases of allergic bronchopulmonary aspergillosis (ABPA) are detected every year as diagnostic expertise and facilities becomes more accurate and sensitive. Moulds such as Aspergillus are increasingly being recognised as being important in sinusitis and allergic illnesses.
The demand for information and support is not restricted to doctors and scientists. The Aspergillus Website hosts an active patient support group of 810 lay people. This was the driving force behind the patient’s meeting.