Personal experiences of taking part in research

Gary Campbell was just 56 when he died of IPF, three years after diagnosis. His wife Helen tells us why she is passionate about raising awareness and funds for APF in Gary’s memory.

'Despite having symptoms it took over 2 years to get a diagnosis - it was extremely distressing.'

‘I've found the hardest thing to be the lack of awareness and understanding about lung scarring.’

'He wanted people to understand what it feels like to have PF. I can only imagine how incredibly proud he would be to see the campaign today.'

Army Veteran George and Mental Health Nurse Angie are determined to live life to the full with PF. They both love to travel – particularly on short breaks. George talks about the precautions he takes to stay as safe as possible.

After 45 years of marriage, Dee's husband Roger sadly died of IPF in February 2022, 6 years post diagnosis. This story is of a love that spanned over four decades and continues on, as this Valentine's Day Dee remembers Roger.

Andy, a former soldier in the British Army, was diagnosed with IPF in 2022. At age 43, the father of three is hoping for a double lung transplant. Despite his devastating diagnosis Andy’s made it his mission to support others living with PF.

A diagnosis of Idiopathic Pulmonary Fibrosis (IPF) three years ago hasn’t stopped former Scotland international cricketer Alec Steele, 82, from keeping wicket at Dundee with the aid of an oxygen tank which is strapped to his back.

During Pulmonary Fibrosis Awareness Month, we want to remember those that have been loved and lost to this devastating disease. Martyn shares with us, in his own words, a truly heartfelt story about his wife, Norma and their life with IPF.

Since Sue Brierley’s diagnosis of pulmonary fibrosis in 2016, her dad Allan Glover stood by Sue, her husband, Tony and their three children.

Peter is living with PF and with some adjustments is still able to play golf, the sport he loves.

Stacey’s dad, Alan, lost his life to Pulmonary Fibrosis in May 2022. During his PF journey, Alan took comfort in reading stories from others, knowing he was not alone. So, in his memory, his daughter Stacey shares his.

Natasha remembers her dad James as a kind, caring and mischievous man who loved his family. Despite battling with symptoms for a while, sadly James passed away following a short diagnosis of Idiopathic Pulmonary Fibrosis.

As another Mother’s Day approaches, the fourth without his mum, Shaun remembers Maureen with great love and tells us why he continues to support APF as an advocate and fundraiser.

Anna-Marie remembers her aunty Jenny as one of life’s wonderful souls. A person who genuinely cared for others, a natural at her job and loved by all those who had the pleasure of her presence.

Six years ago, Una was diagnosed with idiopathic pulmonary fibrosis (IPF). The diagnosis was a huge shock, and it started them on a journey neither of them could ever have predicted.

Tina remembers her husband Ian as a fit, active and strong man. They enjoyed a good social life and many lovely holidays. Sadly, Ian died in October 2022 from pulmonary fibrosis, a disease that had claimed the life of his sister 18 months earlier.

Gail and her daughters Louise and Suzanna discuss her journey with IPF and how they support each other as a family.

On 24th February 2022, less than three years after a diagnosis of IPF, Pauline Popely died in St Catherine’s Hospice Scarborough. Tragically her sister lost her battle with the same disease less than a week later.

Andy Bright, Corporate Partnerships Officer at APF, talks about his ten year journey with PF and he’s made it his life mission to support others.

For Kohinoor this will be the first Mother's Day she will face alone without her mum, Rozmina. She tells us about her mum and why she continues to feel motivated to support Action for Pulmonary Fibrosis

Sofia was only 28 years old when she was diagnosed with pulmonary fibrosis, she shares her experiences...

Emily discusses her Dad John's diagnosis of pulmonary fibrosis, and how they support each other day to day...

Elaine Ball talks about her life with idiopathic pulmonary fibrosis and how she stays active during the colder months...

Clive and Sue met at Ashton under Lyne Fire Station in 1993 when Sue started work as a cleaner there. After Clive was diagnosed with PF in late 2009 he started the Tameside PF Support Group in 2018.

"Research provides hope for better treatment options, extended life expectancy and improved quality of life" Tim's son Dominic

Kelly talks about her amazing Nan Kathleen, their experience of IPF and how it inspired Kelly's studies into Science.

Liz was diagnosed with non-specific Interstitial Pneumonitis(NSIP) in 2011. This was subsequently amended to RA-ILD when the inflammatory arthritis was diagnosed two years later. Liz talks about the impact of having a persistent cough.

Robert, 70 from Lincolnshire, was diagnosed with IPF in 2020, he speaks about the impact of the persistent pulmonary fibrosis cough and ways of managing it.

John, 63 years from Bournemouth, was diagnosed with IPF in April 2017. John talks about the impact of having a cough and how it affects his day to day life.

Pepe, 69yrs, from London was diagnosed with IPF in 2015. Pepe talks about the pulmonary fibrosis cough and ways of not letting the illness spoil daily life.

Physiotherapist Manisha and Nurse Claire talk about the day to day life of Hospice care and the impact it has on patients and their families.

APF trustee, founder member, and Nottingham support group leader, Wendy Dickinson talks about her dad Nottingham Forest manager Peter Taylor who was diagnosed with IPF in 1987. She discusses her hopes for the future.

Sukh's dad was diagnosed with IPF in June 2017, aged 63, just days after her uncle passed away with the same illness. Sukh shares her story of her dad who was"an amazing pillar of strength".

Dawn 51, is living with pulmonary fibrosis and has been supported by the APF support line. "You don’t meet many younger people like myself with PF and it’s rare to find someone who understands what you’re experiencing".

Susan has pulmonary fibrosis. Overnight she switched from frontline nursing to front room home working. Susan talks about her experience of volunteering as a Patient Ambassador with APF during the last 10 months of Lockdown.

Dee and Roger Bryan set up the West Kent PF, Dee, as a carer herself, also started a carer’s group last year in March 2019.

Sheetal was a devoted mother to her daughter, Naisha, and a successful property lawyer when she was diagnosed with a rare form of pulmonary fibrosis (Pleuroparenchymal Fibrolastosis – PPFE) in 2015 at the young age of 38.

Anisa Rasheed decided that this year, for her birthday, she would set up a Facebook Birthday Fundraiser asking her friends and family to donate to Action for Pulmonary Fibrosis instead of buying her presents. She was delighted to have raised £160!

Ruby is a volunteer for APF and passionate about helping others. "Anything I can do to help anyone with pulmonary fibrosis or affected by it, comes from the core values that mum installed in me and wanting to have a legacy in mum"

Living with idiopathic pulmonary fibrosis has affected Sylvia’s mental wellbeing, particularly during lockdown. In her own words, she discusses how the support of her family, getting outside and pulmonary rehab has been a turning point for her.

Antony (pictured with his partner Allison) was diagnosed with idiopathic pulmonary fibrosis (IPF) in his 50s in 2015. He is a self-employed computer engineer, fixing people’s computers in their homes.

‍Many people care for loved ones with pulmonary fibrosis. Tony, in his fifties, gave up work and now cares for his wife Sue who has IPF. Sue is on anti-fibrotic drugs and currently being assessed for transplant. Tony reflects on his experiences.

Catherine Traynor's mum was diagnosed with pulmonary fibrosis in April 2019, having previously been incorrectly diagnosed with sarcoidosis the previous year. Sadly, her condition deteriorated rapidly and she passed away just before Christmas.

In October 2018 Charlie was diagnosed with idiopathic pulmonary fibrosis. After the initial shock, he and his family have set about raising awareness and much needed funds for Action for Pulmonary Fibrosis.

Friends Myles Greensmith and Ron Fish are keen advocates of exercise and pulmonary rehabilitation. After meeting at the Papworth Support Group some five years ago, they quickly established they were both interested in playing golf to stay active.