Personal stories

Read personal stories from people affected by pulmonary fibrosis.

Elaine Grove’s story

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I am a Business Development Manager at Open College Network West Midlands; we are a national Awarding Organisation based in the West Midlands. Each year we support a nominated charity and this year I am so happy that we are supporting Action for Pulmonary Fibrosis.

I was a little overwhelmed to be honest, that, 15 years after losing my mum to Idiopathic Pulmonary Fibrosis (IPF), I had the opportunity to present to my lovely work colleagues, to tell them about the disease and about the charity we have all chosen to support. Who would have thought it?

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Howard Almond’s story

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Howard was diagnosed with IPF two and a half years ago early in 2014, and since then, has been having ‘breathing’ exercises with a singing tutor.

Howard was in a band in the 60s, and still has his guitar at home. He’s still working in the computer software development industry. He lived in Germany and Austria for 20 years, and has two children and four grandchildren. He looked after his own mother, who had dementia for 10 years but she passed away in 2013. Howard describes himself as very quiet under normal circumstances, but will intervene when people are talking rubbish. He can be single-minded about certain things that he really cares about.

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Anne Doran’s story

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“Receiving the diagnosis of Idiopathic Pulmonary Fibrosis (IPF) left me feeling devastated and alone. Then the fear kicked-in with immediate flashbacks to my father’s death from the same disease thirty years ago.” Anne was diagnosed with IPF in November 2012. She is an inspiration to others through her determination to live her life to the full and says, “You could spend life focusing on negative or go out and live your life to the best you can.”

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Gordon Butler’s story

Gordon Butler

I was diagnosed with Pulmonary Fibrosis in February 2007 thanks to my wife, Kath, insisting I went to the doctors with a continuous cough. Ever since having pulmonary tuberculosis in 1962 I have had, or so I thought, a weak chest, suffering regular bouts of bronchitis and pleurisy. I was also a very heavy smoker and obviously, in the light of modern knowledge, this couldn’t have helped in any way.

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Wendy Dickinson’s Story

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My Dad was diagnosed with Pulmonary Fibrosis in 1997 when he was just 59. At the time it was called Fibrosing Alveolitis and I – along with most other people except for the medics – had never heard of the disease.

In a strange way, because of that, we didn’t worry overmuch. This was pre-Google days so there wasn’t the avalanche of information that is available now on the Internet.

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Tony Holmes’ Story

I was diagnosed with IPF in March 2013 after undergoing a VATS lung biopsy in December 2012.
In some ways it was such a relief, because at long last I knew what was wrong with my lungs, why I cough, why I get breathless. My consultant, Dr Paul Beirne explained to me everything about this terrible lung disease, how it is progressive, and the fact that there is no cure.

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Mary Hicks’ Story

In 2004 my mother was diagnosed with Pulmonary Fibrosis. It soon became very apparent from a family member and carer perspective how little support was available. When my mother passed away in 2009 we decided to set up a monthly support group for patients. We felt we would be able to give valuable support to patients and their families from our own experiences, and have a great team of specialists who play a vital role.

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