‘We lost our mum to the same lung disease as Keith Chegwin... now we want to help others’
On the first anniversary of their mum Anne’s death from the same chronic condition as the television presenter, Maria Elena and Alex McGreevy tell Stephanie Bell how they plan to raise money to form a new support group here for others affected by it
One year ago today Belfast grandmother Anne McGreevy lost her battle with the same devastating lung disease which claimed the life of TV presenter Keith Chegwin last week.
Anne was an active 74-year-old who never smoked or drank and her death from Idiopathic Pulmonary Fibrosis (IPF) has left her devastated family seeking answers.
Today the youngest of her eight children, Maria Elena will mark the first anniversary of her mum’s death by announcing plans to set up a support group for people living with IPF in Northern Ireland.
Maria Elena (34) also recently launched an awareness campaign on Facebook and has also just set up a Go Fund Me page.
The mum-of-one, who works as an assertive outreach worker for a charity, has set herself the challenge of taking part in ten 10k races this year to raise funds towards a new support group.
IPF made headlines last week with the tragic news that Keith Chegwin had died from it, aged just 60.
Also last week, Katie Price had to be helped out of the Loose Women studio when she got upset talking about her mother Amy’s battle with the terminal disease.
Anne’s family was struck by the lack of awareness of the condition which made dealing with their mum’s diagnosis even more difficult.
It is why Maria Elena, who was her mum’s main carer in her final months, is now determined to create awareness and help make it easier on others.
She says: “For us, it was just confusion after mum’s diagnosis. We had no answers and people had never heard of IPF so even mum’s friends didn’t understand how ill she was.
“There was also a real lack of knowledge within the medical world here, although that has improved since.
“We just want to try and provide others with the support and information which we didn’t have and which made things all that more difficult.”
IPF scars the lungs and makes breathing difficult. It is a progressive condition and in some people the symptoms gradually get worse over several years while for others, it can develop more quickly.
Around 6,000 people are diagnosed with IPF every year in the UK and, while it can affect people of all ages, 85% of diagnoses are made in people over 70.
There is no cure although treatments to slow down the progression of the disease have been developed.
Anne was diagnosed in 2013. A retired medical secretary, she had a cough which her daughter says she blamed on the air-conditioning in her work.
In what was a devastating double blow for their eight children and seven grandchildren, Anne’s husband had died of lung cancer just a year before Anne’s death.
Having lost her dad Pat to lung cancer in December 2015, aged 68, Maria Elena and her two sisters and five brothers were struck by just how little was known about her mum’s condition.
She explains: “For a number of reasons mum’s diagnosis would have been so much easier had it been a cancer diagnosis.
“Medical professionals know more about cancer, and people generally understand it; there are more treatment options and the outcomes can be more positive.
“We didn’t understand IPF and people hadn’t heard of it so no-one knew what it was when mum was talking about it.
“There was a lack of knowledge even among the medical profession and as a family we had to turn to Dr Google.
“All we knew was that she had a lung condition and there was no cure for it and her life expectancy was three to five years.
“At that time there was a new medication which had just been approved but we were told it was very expensive and she would not qualify for it until her condition was bad enough. She did get it in the end and I believe there are now two medications approved to try and slow down the progression of the disease, but they are so new that the people who are taking them are guinea pigs.
“Also there was no specialist consultant in Northern Ireland then, although there is one now at Belfast City Hospital.
“My passion in raising awareness is to highlight that more research needs to be done. We need a better understanding in the medical world here, and just generally, of what IPF is.”
Anne had retired in January 2013 and was a very active, outdoorsy type.
She was a member of a walking group and her family says she was constantly studying and learning, taking up a course at Queen’s University, Belfast, on Greek and Roman civilisation and ancient history after her terminal diagnosis.
The impact of the disease left her breathless, dependent on oxygen and unable even to climb the stairs in her home.
She also was prone to infections, lost her appetite and suffered from extreme fatigue.
IPF also leads to a heightened sensitivity to the sun which, as someone who loved to be outdoors, hit her particularly hard.
Her son Alex (46), who works as a public relations officer for the Northern Ireland Hospice, says: “Mum was the most generous, kind lady you would ever hope to meet.
“She was so energetic, which made the symptoms of this illness even more devastating for her.
“Exercise is vital for maintaining stability of the condition and to slow progression, but that is a catch-22 because the more an individual would try to exercise the more they might feel the impact of the illness due to extreme exhaustion and breathlessness.
“As well as being breathless, mum lost her appetite and she suffered severe fatigue. Just getting up during the night to go to the toilet would trigger her cough and that could leave her fatigued.
“The disease made her sensitive to the sun and she had to cover herself in a factor 50-plus sun protection cream every day and couldn’t sit out in the sun, which was hard for her.”
As Anne’s condition deteriorated late last year she became more susceptible to infection. In the end she took an infection which went into her bloodstream.
It was only after she lost her mum that Maria Elena discovered, through a UK support group, that emergency medical packs are available to patients in England.
These packs contain antibiotics, steroids, painkillers and inhalers.
She says: “The consultants mummy had were lovely and they did the best they could.
“The British Lung Foundation has told us there are more cases of IPF in Northern Ireland than anywhere else in the UK.
“I had been asking for mum to be given an antibiotic since October and I was told she didn’t need one. I was with her all the time and I knew that she did.
“It was only after mum passed away that I read about the emergency packs.
“It really frustrates me that we weren’t offered that and I only found out about it after mum passed away. That really stuck with me. I believe we should have the same standard of care that there is across the water in the rest of the UK.”
Maria Elena and her brothers and sisters are determined that people here will be better informed in the future.
They hope that a new support group will give patients and their families somewhere to go for answers. They also hope that by creating awareness others will be more understanding of people diagnosed with the condition.
She says: “It was difficult that people didn’t understand. There was also no group for mum to go to for support and no one for her to talk to.
“We just took it one day at a time. It has been hard on all of us losing both parents within a year. They had both just retired and were looking forward to their retirement.
“It has left a big hole in all of our lives.
“I’ve set myself the target of running ten 10k races this year to raise funds towards a support group.
“I want to do them between mum’s first anniversary and before her next one.
“The Facebook page IPF Northern Ireland has just launched as well and I hope to use it to reach out to patients and their carers and share information so that people can be better informed.”
You can support the family in their bid to set up a support group by visiting gofundme.com/IPFNorthernIreland
A chronic and painful affliction
What is IPF?
Idiopathic pulmonary fibrosis (IPF) scars your lungs and so reduces the efficiency of your breathing.
The build-up of scar tissue is called fibrosis. Fibrosis causes the lungs to become stiffer and lose their elasticity so they’re less able to inflate and take oxygen from the air you breathe.
IPF is a progressive condition and usually gets worse over time. In some people the symptoms gradually get worse over several years. For others, the symptoms get worse more quickly.
It’s difficult to predict how IPF will progress. Sometimes when the condition has been stable, people can get sudden flare-ups of symptoms, called acute exacerbations. Everyone is different — talk to your specialist doctor about your individual situation.
How does IPF affect breathing?
Each time you breathe in, you draw air in, down through your throat and into your windpipe. Your windpipe splits into two smaller tubes, called bronchi, which go to your lungs. The air passes down the bronchi, which divide into thousands of smaller airways called bronchioles.
The bronchioles have many small air sacs. Inside the air sacs, oxygen moves across paper-thin walls to tiny blood vessels and into your blood. The air sacs also pick up the waste gas, carbon dioxide, from your blood ready for you to breathe it out.
If you have IPF, scarring affects the air sacs, limiting the amount of oxygen that gets into the blood. With less oxygen in the blood, you can get breathlessness from everyday activities like walking.
Who’s at risk?
The latest research suggests about 6,000 people are diagnosed with idiopathic pulmonary fibrosis (IPF) every year in the UK.
Men are more likely to have IPF. IPF can affect people of all ages, but around 85% of diagnoses are made in people over 70.
Visit blf.org.uk for more details
Belfast Telegraph Digital