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Grandmother shares story of living with rare lung disease, praises Ipswich Hospital

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Lesley Berry, 74, hopes her story will encourage others with symptoms to seek early medical help after being diagnosed with a rare and serious lung condition in 2020.

The big picture: Idiopathic pulmonary fibrosis (IPF) is a life-limiting disease that causes lung scarring, making breathing increasingly difficult. It affects around 5,000 people annually in the UK, more than leukaemia, but few people have heard of it.

Lesley Berry
Lesley Berry hopes her story will encourage others with symptoms to seek early medical help after being diagnosed with IPF in 2020

Why it matters: Early diagnosis and treatment can help slow the disease's progression, giving patients more quality time with loved ones.

Key facts:

  • IPF causes lungs to become stiffer and smaller over time

  • Prognosis after diagnosis is typically 3-5 years

  • Symptoms include persistent cough and increased breathlessness

  • Those over 50, with a family history or long-term exposure to smoke/dust, are at higher risk

What they're saying: "The illness steals your breath, shrinks your world and makes everyday life a huge challenge," Berry said. "It's like climbing a mountain every single day."

Between the lines: Despite the challenges, Lesley praises the care she's received: "The care I've received from the respiratory team at Ipswich Hospital has been marvellous, and I can't praise them enough."

What's next: Lesley is now raising funds for research to help find a cure. She urges anyone experiencing prolonged breathlessness or persistent cough to consult their GP.

How to help: Support Lesley's fundraising efforts here: https://actionforpulmonaryfibrosis.enthuse.com/pf/lesleyberry

For more information: Visit the NHS website or www.actionpf.org, or call the Action for Pulmonary Fibrosis support line on 01223 785725.