Amy Price is working to increase the awareness surrounding IPS which accounts for 1 in 100 UK deaths
When Amy Price was told her increasing breathlessness was caused by idiopathic pulmonary fibrosis (IPF), the diagnosis came as a huge relief.
“I had been going to an asthma clinic for years, so I thought it must be another form of asthma,” she explains.
And, as her doctor reassured her: “At least it’s not cancer.”
But her relief was short-lived because while lung cancer can sometimes be cured through surgery, chemotherapy and targeted therapies, there is no cure for IPF, a little-known but incredibly cruel condition which causes progressive scarring of the lungs.
Mum means the world to us. The news of her diagnosis was a shock but we are determined to fight IPF together as a family
A transplant is Amy’s only hope of beating the disease.
Her daughter, former glamour model turned reality TV star and businesswoman Katie Price, offered one of her lungs but Amy told her: “Don’t be silly, you have to think of your own future and your children.”
Amy, who is 64, has never smoked and has been active all her life, insists: “I’m not going anywhere yet.”
But the reality is that average survival after a diagnosis of IPF is between three and five years.
Katie Price attending the 2017 National Television Awards at The O2 Arena
She knows the score and admits: “You look at things differently. It has made me think about pensions and life insurance. I want to get everything in place.”
And it’s clear she worries about the future when she can’t be there for her children – Katie, Sophie and Daniel – as any mum would.
She says: “My three children are dealing with it in different ways but I think Katie is the one it has affected most.”
However there is one thing on which they all agree, they must find a silver lining to Amy’s devastating diagnosis and the whole family is now working to raise awareness of IPF and help the British Lung Foundation raise money for much-needed research into the disease.
Katie says: “Mum means the world to us. The news of her diagnosis was a shock but we are determined to fight IPF together as a family.”
They have not shied away from difficult conversations either.
As Katie explained when she and Amy appeared on the popular ITV show Loose Women to talk about her diagnosis: “People think because we don’t show a reaction, we don’t have a heart. Because we have so many dramas we have a defence mechanism.”
Amy agrees, adding: “I think Katie being in the limelight has made me more emotionally resilient. And what we’ve had to deal with about Harvey gives you a different outlook.”
Amy Price appeared on TV alongside her daughter and grandson to discuss Harvey’s disability
Harvey, Katie’s 15-year-old son, has septo-optic dysplasia, a rare genetic disorder which has left him with multiple disabilities including Prader-Willi syndrome, which is characterised by constant hunger, diabetes insipidus, learning difficulties, ADHD and impaired vision, making him legally blind.
Amy has always taken an active role in Harvey’s care and says: “He has taught me a lot. Harvey has been through so much in his life and he just gets on with it. It helps me to see how he deals with things and to see all the different milestones he achieves. It makes you look at life in a different way.”
Katie and Sophie were with their mum when her diagnosis was confirmed.
“It was a bit of a comedy,” Amy recalls.
“Katie had an appointment at Moorfields Eye Hospital for Harvey and when I said I was going on to see this specialist [Dr Toby Maher, an international authority on IPF based at the Royal Brompton Hospital in London] she insisted on coming too. Then Sophie said: ‘I’m coming along as well’.
“So all of us were there, with Harvey kicking off. Poor Toby must have been wondering, ‘What the hell do I have here?’”
Dr Maher believes that Amy has had IPF for about four years, although Amy thinks it may have been longer.
“For years I have been going to the doctor for what they thought was asthma. I’ve had a dry cough for years and years.
“They tried me on all sorts of different pumps and inhalers but nothing seemed to make much difference. It still wasn’t picked up when I got a chest infection. By February or March this year I was feeling really rough. I went back to the asthma clinic and told them, ‘This isn’t right’.”
Amy had always been fit and very active but everyday tasks were leaving her breathless.
Her insistence that it was something more than asthma finally prompted her GP to refer her for a chest X-ray, which showed extensive scarring in the lower halves of both lungs.
“The asthma nurse and doctors didn’t pick up the symptoms, that’s why I am pushing for more education, so they recognise the symptoms and may be able to save others from this condition.”
Katie Price and son, Harvey, attending a charity celebrity football match
The British Lung Foundation estimates that IPF affects about 32,000 people in the UK.
The most obvious sign is feeling short of breath, which explains why the condition can be mistaken for more common lung problems. A cough is another clue.
As in Amy’s case, some patients develop a dry tickly cough long before their IPF is diagnosed and Dr Maher says an important tell-tale clue is a crackling sound which can be heard via a stethoscope during inward breaths.
“We need much better awareness,” says Amy, who has been visiting local GP surgeries to distribute leaflets about IPF and other lung diseases.
“One in 100 deaths each year is due to IPF – that’s more than ovarian cancer, leukaemia, brain or stomach cancer. It’s crazy that it doesn’t get the attention it should.”
Crucially, even though there is no cure, early diagnosis can make a huge difference.
Pulmonary rehabilitation will help preserve lung function and there are now antifibrotic drugs which slow down the rate of scarring.
Dr Maher says: “There is a building body of evidence to suggest ultimately this will help people to live longer.”
Amy is now taking one of these new treatments and has joined a singing group to help improve her lung function but having seen her mother struggle with emphysema, she knows that she will ultimately become dependent on oxygen.
But until then she has vowed to live life to the full.
“Ibiza is definitely on my list,” she says, plus the British Lung Foundation’s Big Breakfast November-long campaign to raise money and awareness of lung disease.
If you would like to organise your own BLF Big Breakfast visit blf.org.uk/bigbreakfast or contact the BLF Events team at firstname.lastname@example.org / 020 7078 7912