Pulmonary fibrosis stories

As we mark Dying Matters Week, 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 Wendy Dickinson talks about her dad Nottingham Forest manager Peter Taylor who was diagnosed with IPF in 1987 and lived with the condition for three years. She discusses her motivation for joining the charity, and 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".

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.

Tricia Kay, 74, has Hypersensitivity Pneumonitis, Tricia shares her story of the impact of the support line. "I feel I can 'let go' if there is anything I want to discuss which I would normally bottle up and keep from my family."

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".

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"

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.

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.