Raising awareness of Pulmonary Fibrosis 

10/09/2013 00:00 
UCLH is leading the way in treating patients and researching a cure for Pulmonary Fibrosis, a rare fatal respiratory disease for which there is no cure.

As part of Pulmonary Fibrosis Awareness Month this month there will be a stand in the University College Hospital atrium (September 11 from midday until 2pm) and a campaign on Twitter to raise awareness of the condition http://bit.ly/12KgiR8

Dr Joanna Porter, consultant chest physician, and Donna Basire, medical PA for the thoracic medicine department, set up Breathing Matters, a UCLH Charity fund supporting the work of the Centre for Respiratory Research at UCL in their search to find a cure for pulmonary fibrosis and infection.

Under the banner of ‘Breathtember’ the charity is encouraging people to look out for the symptoms of pulmonary fibrosis. To support their campaign, two patients have written moving accounts of their experience of the disease.

Sasquatch Bob talks about how he was inspired to record a charity single in memory of his partner’s inspirational father, Richard Sainsbury, who recently died of pulmonary fibrosis.

John Beverton, a post-lung transplant patient with pulmonary fibrosis, is recovering well following his operation. “I want to make the most of the new time I have,” he writes.

Patients often present late in the disease with non specific symptoms such as shortness of breath, fatigue and a persistent cough. Misdiagnosis is common as symptoms are vague and early lung changes are often not readily identifiable on chest X-ray. A lung function test or CT is more sensitive.

Although the exact cause remains a mystery, people with rheumatoid arthritis and other auto-immune diseases are at increased risk. Although lung transplants are an option, lung donors are rare and many patients die whilst on the transplant waiting list.  Urgent new therapies are desperately needed.

As well as looking after patients with lung fibrosis at UCLH, Dr Porter also heads a research group at UCL.

She said:  “Lung fibrosis typically strikes healthy middle aged people and its progression is often swift. Although we can manage the symptoms, the actual condition is currently untreatable.”

“Lung fibrosis is not a glamorous disease. There is so little that can be done to help patients…and lung transplants are often too little, too late. We must put our hope in research.”

 For more information visit: http://www.breathingmatters.co.uk  

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