‘My hope is to be the voice of cystic fibrosis awareness’

A Nenagh man is trying to raise greater awareness about cystic fibrosis, a largely misunderstood disease in spite of its alarming prevalence in Ireland.

This country is home to the highest per capita rate of cystic fibrosis in the world.

Around 1,400 children and adults are living with the condition here.

Among them is Dominic Murphy, who has been trying to cope with life with cystic fibrosis - or CF - for more than 40 years. He has spent many of those years campaigning for a greater level of service for people with the disease, a campaign that in many ways proved successful in 2016 with the opening of a dedicated CF unit at University Hospital Limerick.

But Dominic, who goes to Dublin for his treatment, remains frustrated by the lack of general awareness among people about the condition he lives with.

“My reason for talking about my experience with cystic fibrosis is I am asked all the time in Nenagh and up in the Dublin, the capital: ‘What is CF?’

“Where is the knowledge and the education for people to learn on this?” he asked. “There’s nothing - no TV ads, no billboards, no GP or A&E departments to explain it!

“It makes me so let-down by the powers that be do not help or care or even recognise this horrible, killer illness.”

‘OCTOPUS ILLNESS’

A multi-organ disease that primarily affects the lungs and digestive system, Dominic has dubbed CF the “Octopus Illness” because of the many additional problems it presents. Among the ones he listed were diabetes, kidney failure and painful spinal/postural problems. Cancer is also more common in people with CF.

Apart altogether from that, Dominic regards mental ill-health as a major factor in people living with CF. He mentioned common symptoms of ADHD, depression, anxiety, anger and stress.

In his experience, living with CF gets harder as one grows older. Dominic has a resistant strain of the illness, meaning it is not as easy to treat with antibiotics. He requires long and lonesome hospital stays as well as ongoing physiotherapy, medication and use of breathing aids.

Dominic has to undergo pulmonary function tests to assess the capacity of his lungs. “Mine stands at 31% currently and it is scary to think that the requirement for new lungs is not far away,” he said. “It’s a hard choice to be making in your 40s.”

THE HUMAN CONNECTION

Born with CF in 1984, Dominic went to Crumlin hospital in Dublin for treatment as a child. He began attending St Vincent’s in 1998.

He has mostly happy memories from both hospitals. Even though they were dealing with a serious illness – one that claimed the lives of some of his fellow patients – the medical staff and patients were able to intermingle on the wards. They shared meals together and built friendships, which Dominic said made the hospital stays a lot easier.

Unfortunately, he said new practices of isolating patients to prevent the spread of bugs has made the experience a lot more difficult.

“Now it’s gone in a different, unhealthy way mentally,” Dominic said. “We don’t mix. We stay in one room.

“When I go up, I am on my own for weeks and weeks. The TV or mobile phone is my only communication. But some days, a human hug or something is all you want. It deeply saddens me and yes, it’s for infection control but what about mental health and humanity health?

“Again, it’s another problem. I want to see the sunshine in being well, the sunshine of less management control of staff where they’re all so emotionally trained to be distant. It’s a sad generation that has happened. I would love to problem-solve and fight for connection for humanity.”

‘THE RAW SIDE’

The Nenagh man spoke of difficult school days, of trying to fit in to a situation where he missed a lot of school because of his illness, and of where his classmates made fun of him.

“I know in my school days back in the ‘80s or ‘90s there was slagging, but kids mock what they don’t understand,” Dominic commented. He has found this lack of understanding manifested in adulthood and said he and many of his fellow CF patients are tired of trying to explain their condition to others. He spoke of wanting people to see “the raw side” of how CF impacts his day-to-day life, the things he has to do at home in order to stay well until that inevitable return to hospital, and what happens then in hospital.

“This is a human interest story that involves so much human interest,” Dominic said. “There are ups and there are downs, but it’s educational as well.”

In spite of all the setbacks, he holds hope that the situation for people living with CF can move to a better place. He made the point that people are unlikely to donate to a cause they don't understand; if greater awareness of CF was raised, then perhaps the lives of those dealing with it would improve. Dominic hopes to use his own life experience to bring about that change. “A story is best told by the person who lives it,” he reasoned. “There needs to be a voice in the media and public, among teachers, even a public lecture. My hope is to be the voice of cystic fibrosis awareness.”