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Brave woman wants to raise awareness of incurable lung condition

Lynda Frobisher.

Lynda Frobisher.

A woman who lost both her mum and her uncle to an incurable lung disease wants to raise awareness of the condition.

Jeni Yeadon, a media sales consultant from Carnforth, was devastated after losing her mum Lynda Frobisher at the age of 64 to idiopathic pulmonary fibrosis in May 2012.

Only four months after her mother died, her uncle Graham Woodward, then aged 63, was diagnosed with idiopathic pulmonary fibrosis shortly after undergoing a triple heart bypass.

Sadly, Graham died in August of this year after succumbing to the condition.

Jeni said: “I am desperate for people to be aware that the disease can affect anyone. There is virtually no treatment available for IPF. My mum and uncle Graham were given the steroid Prednisilone but now I’ve learnt that this can speed the disease up. The medical profession have no idea how to treat this condition.”

Idiopathic pulmonary fibrosis, once diagnosed, has a life expectancy of three to five years.

Fifteen thousand people are diagnosed with PF a year and 5,000 die each year from the condition, according to the British Lung Foundation.

There is a drug called Pirfenidone which may slow down the condition but that costs £26,000 a year per patient.

A single lung transplant can be performed but if the condition affects both lungs then that isn’t an option.

Jeni said: “It’s been like a living nightmare. My mum was an avid gardener, she used to go caravanning and take her dog out. When she got the condition, she couldn’t get out of her chair and she could only walk five steps with oxygen.

“She even stopped talking and eating. I just want people to be more aware before they are given this nightmare scenario.”

A spokesperson for NHS Lancashire North Clinical Commissioning Group said: “All clinical commissioning groups across Lancashire have funding available and have commissioned Pirfenidone use since May 2013.

“This was following a recommendation by the National Institute of Clinical Excellence (NICE) in April 2013.

“The decision to prescribe Pirfenidone is down to the individual hospital consultant responsible for the care of the patient.”

IPF week runs from September 21 to 29. For more information visit www.ipfworld.org.

Visit www.actionpulmonaryfibrosis.org to find out more. There is a Facebook group for sufferers and their families called Pulmonary Fibrosis UK.

 

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