We want to hear from you. Your stories are crucial to communicating our message; to the media, parliament, support groups and to inspire more people to fundraise for us. Tell us your story.
Watch the inspiring stories of people living with the disease, including their challenges and triumphs. Produced by Boehringer Ingelheim, enabled by Action for Pulmonary Fibrosis.
Sue and Tony Brierley’s story
My wife Sue started being ill on holiday in Ibiza in 2015; she was only in her early fifties when she developed the first symptoms. Up until then she was a brilliant example of a very fit fifty something. She did everything the expert’s advice, eats well, watched her weight, didn’t drink alcohol and took loads of exercise. She was a very independent lady and loved going to Zumba with our daughters and doing charity runs. She could shop for England and she loves following our footie team and still manages this.
Terry and Tracey’s story
“As the music played, the day unfolded and we reached out to our listeners, the money rolled in and our target was smashed twice. Since most of the Net Radio Group listeners are visually impaired and not working or on relatively low income, this is a huge achievement and speaks volumes of the support that’s out there. It was a truly memorable day of radio.” Terry Clasper, co-founder of The Phoenix.
Sandeep Bansal’s story
Seeing Dad suffer the way he did has motivated me to work with Action for Pulmonary Fibrosis to help others who have pulmonary fibrosis so that hopefully in the future they won’t have to go through what we went through. Watching my Mum rise to the challenge has inspired me to take this step. If she was able to help make our Dad’s life better whilst being unwell herself, then surely we can continue her good work.
Leslie Ward’s story
The consultant sent me for another CT scan and I was then sent a follow up appointment for three weeks later. We were relieved as we thought “so it can’t be lung cancer or we would have been referred earlier.” I was told I had a condition called Idiopathic Pulmonary Fibrosis (IPF) which was progressive and that there was no treatment available. We had never heard of IPF nor had anyone else we spoke to and we were not given any indication as to life expectancy (initially we thought it might mean a slow decline like ageing) and so like everyone else we looked it up on the internet.
Robert Gault’s story
Robert’s GP listened to his lungs and heard a crackling sound when he took a breath – a tell-tale sign of IPF. Robert was sent for a chest x-ray which indicated that he may have IPF.
“The doctor told me he thought I had IPF. I’d never heard of it before. He printed me out a 3-page Google article and sent me on my way. When I got back into my car, I sat and read the printout. It was only on the last page, in the last paragraph that I read the prognosis: 3-5 years life expectancy. This completely knocked me for six. I rang my wife and told her…she was in complete shock.”
Steve Day’s story
When I received the diagnosis I was speechless and numb. After a few weeks of digesting the news I felt I had to break the news to our children and grandchildren. This was one of the hardest things I had to do. The children were upset and the grandchildren were at an age where they couldn’t understand the full implications of the illness. This was compounded by the fact that no-one, including myself and my wife, had ever heard about this condition.
Janet Porteous’ story
“Seven years ago I noticed an advertisement on TV saying that if you have had a cough for more than three weeks to go and get it checked out. I knew I had a slight cough but it was more a clearing cough from a tickly throat. My daughter urged me to get it checked and nagged me until I finally went to the doctors. They sent me to have an X-ray where they noticed some abnormality. I then went to have a CT scan.
Stephen Morgan-Hyland’s story
I didn’t expect a Saturday text message; Dad wasn’t due back from Italy until the following week. ‘Came home early as weather not too great and I was feeling unwell’, it read. That was 13 May, this year. The following morning an ambulance took Dad to a local hospital, with him suffering severe breathing difficulties. Five days later and a week after that Saturday text message, the last one he sent to me, he transferred hospitals to an Intensive Care unit; by now in an induced coma. Dad died on Monday 22 May of multiple organ failure and severe pulmonary fibrosis.
Elaine Barker’s story
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?
Howard Almond’s story
Howard was diagnosed with IPF four 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.
Anne Doran’s story
“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.”
Gordon Butler’s story
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.
Wendy Dickinson’s Story
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.
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.
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.