07/10/2024 | Press releases

‘It’s like climbing a mountain every day – but the care I’ve received has been marvellous’

A devoted grandmother has shared her experiences of living with a debilitating and life-changing illness so that others with symptoms can get help early.

Lesley Berry (pictured) was diagnosed with idiopathic pulmonary fibrosis (IPF) by Ipswich and Papworth hospitals in June 2020 after suffering with coughs and increased breathlessness for more than a year.


Like many people, the 74-year-old knew very little about the illness at the time, and is now speaking out about her condition to help raise awareness and encourage others with symptoms to see their GP.

“Pulmonary fibrosis is a serious, life-limiting disease which causes the lungs to become stiffer and smaller over time, making it more and more difficult to breath,” said Lesley, who lives in Felixstowe. “The prognosis after diagnosis is between three and five years, during which time life as you know it declines.

“The illness steals your breath, shrinks your world and makes everyday life a huge challenge. It stops you from doing all the things that were easy before, like showering, dressing and enjoying time with grandchildren, family and friends. It takes extraordinary effort to do ordinary things – it’s like climbing a mountain every single day.”

IPF is a type of pulmonary fibrosis where the cause cannot be found. Although there is currently no cure, anti-fibrotic drugs can help to slow its progression, while some patients may be suitable for a lung transplant.

Those with the illness may eventually need to rely on oxygen cylinders to be able to breathe.

“The care I’ve received from the respiratory team at Ipswich Hospital has been marvellous and I can’t praise them enough,” added Lesley, who is now raising funds for research to help find a cure. “They have helped me enormously on this journey by providing both medical and holistic support. They have now referred me to the hospice for extra support which I’m finding really useful.

“I am now trying to spread the word about this illness so that others can get help early. If you’re feeling out of breath with a persistent cough which lasts more than eight weeks, ask your GP if it could it be pulmonary fibrosis. You could be given medication to help slow its progression, in turn giving you more time doing the things you enjoy with the people you love.”

You can support Lesley’s fundraising by visiting her webpage.

For more information about idiopathic pulmonary fibrosis, visit the NHS website.

 

Notes to editors:

The term ‘pulmonary fibrosis’ is used to describe scar tissue in the lungs. The term ‘idiopathic’ is used when the cause is unknown.

Early symptoms of pulmonary fibrosis include:

  • Feeling more out of breath than usual with everyday activities, such as walking upstairs.
  • A persistent cough every day and lasting more than eight weeks.

The illness is more likely to affect people who are:

  • Older than 50
  • Have a family history of lung scarring
  • Smoke or have smoked
  • Have been exposed to smoke or dust over a long period of time
  • Have certain diseases such as rheumatoid arthritis

Pulmonary fibrosis kills around 5,000 people each year, which is more than leukaemia. It is more likely to affect people who are over 50, have a family history of lung scarring or have smoked or been exposed to dust or smoke over a long period.

For more information about pulmonary fibrosis, visit www.actionpf.org/ or call the Action for Pulmonary Fibrosis support line on 01223 785725.

 

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