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

Lesley Berry, 74, who lives in Felixstowe, had been suffering from coughs and increased breathlessness for over a year before she was diagnosed with idiopathic pulmonary fibrosis (IPF) by Ipswich and Papworth hospitals in June 2020.

Early symptoms can include feeling more out of breath than usual and a persistent daily cough that lasts for more than eight weeks.

At the time of her diagnosis Mrs Berry knew little about the illness and is now determined to speak out about her condition to encourage others with similar symptoms to visit their GP.

Lesley Berry had been suffering with coughs and increased breathlessness for a year before her diagnosis. Lesley Berry had been suffering with coughs and increased breathlessness for a year before her diagnosis. (Image: East Suffolk and North Essex NHS Foundation Trust) She said: "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.

"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 medical professionals cannot identify the cause. 

Although there isn't a cure, anti-fibrotic drugs can help to slow the progression of the illness while some patients may be eligible for a lung transplant.

Eventually some patients may need to use oxygen cylinders to breathe.

However, Mrs Berry is full of praise for the care she has received from Ipswich Hospital.

She said: "The care I’ve received from the respiratory team at Ipswich Hospital has been marvellous and I can’t praise them enough.

“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.”

Lesley Berry is full of praise for the care she has received at Ipswich Hospital. Lesley Berry is full of praise for the care she has received at Ipswich Hospital. (Image: East Suffolk and North Essex NHS Foundation Trust) Over 5,000 people every year are killed by pulmonary fibrosis. 

It is more likely to affect people over 50, who have smoked or have been exposed to smoke or dusk over a long period of time.

Those who have certain diseases such as rheumatoid arthritis are also more susceptible. 

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