Rare lung disease's devastating impact on family
A Ballycastle woman has been speaking about the tragic impact on her family of a rare form of lung disease.
Una McMillan was diagnosed with IPF (idiopathic pulmonary fibrosis) last summer. Most people, who get the same diagnosis have never heard of the condition, but Una was unfortunately all too aware of the disease - her mother, brother and sister died from it.
It was after her sister Eileen’s death that Una decided to do a sponsored hill climb in memory of her family members and to raise funds for the British Lung Foundation.
Una and her husband, Tom, were avid hill climbers but she decided to go for a check-up with her GP before she undertook this latest challenge. She expected to be told her shortness of breath was the result of putting on some “retirement weight”. Instead, a CT scan showed scarring on the lungs, one of the key early signs of IPF.
Speaking in support of IPF Week, Una said: “When I was diagnosed I wouldn’t believe it, I was in utter shock. I thought, I’ve never smoked, I’m always out in the fresh air, I couldn’t believe I had this disease.”
Una knew that the prognosis for IPF was three to five years and that, although there are some medications to ease the symptoms, people with IPF become increasingly debilitated.
“It was like finding myself in a black hole with no way out. It’s something you put away in a box otherwise you go mad. It’s hard because I know what’s ahead of me, I’ve watched it in the family. I try not to dwell on it, because you have to keep going, I can’t afford to let myself think about it too much.”
IPF is a type of interstitial lung disease (ILD), which causes continuous scarring of the lungs, making it increasingly difficult for a person to breathe. There are currently around 1,300 people in Northern Ireland who have the condition. To mark IPF Week, the British Lung Foundation (BLF) has launched a new report which looks at services across the UK, making key recommendations to improve the experiences for people living with this disease.
Una continued: “I have to be very, very careful with myself. If I do too much I end up having to spend the rest of the day in bed. When the tiredness comes over you it’s not like normal tiredness, your head goes funny, you get a nervousness inside your stomach, have to sit down, rest and your legs feel heavy. At times you struggle with your breathing.”
In order to keep her fitness and lung function up, Una goes the gym twice a week for a spin class, as well as yoga and a pulmonary rehabilitation class. She has also thrown herself into numerous ventures for BLF raising money for research and raising awareness.
“Me and a load of family and friends did a sponsored cycle round Lough Neagh at Easter time, and my daughter who lives in England did a 10km run with her work colleagues. My son also did another cycle over in England too. And we’ve plans for a local fishing competition and a gala night at the Ballycastle Golf Club – we’ve even got the band Altagore to play too!”
“I just really want to make people aware of IPF. I’m fighting for my family and for everybody else struggling with this terrible disease, and hopefully one day they can find a cure.”
The BLF report recommends developing new care pathways and a team of experts has been working hard over the last six months to develop this.
Irene Johnstone, Head of BLF Northern Ireland, said: ”I hope that people in Northern Ireland lend their support to this IPF Week, so that IPF services in the Region, can benefit from the huge rise in awareness and research donations that has led to real progress being made in other deadly diseases.”
Dr Eoin Murtagh, Consultant Respiratory Physician, Northern Health & Social Care Trust, said: “If we truly want to offer the best support to the people of Northern Ireland living with this devastating disease we have to improve access to personalised treatments, diagnosis and support including anti-fibrotic drugs, ILD specialist nurses, multi-disciplinary diagnosis, oxygen therapy, pulmonary rehabilitation, peer support groups and palliative care.”