His words to me were, ‘Rory, unfortunately, there is no cure and it gets worse’
After years of excruciating pain from chronic inflammatory condition AS, Rory Mooney has his life back thanks to an experimental drug
Dr Rory Mooney: “I am the luckiest man on this planet.”
Dr Rory Mooney is upbeat. He has just moved into a new business premises and is optimistic about the future. He recently set up a medical company, Class Medical, and has received €500,000 in private investment to sell a urology invention. This year, the business won the Irish laboratory award for innovation.
These achievements have come through immense struggle, however.
Mooney is one of an estimated 20,000 Irish people who suffer from ankylosing spondylitis (AS), or the related illness, non-radiographic axial spondyloarthritis (nrAxSpa). These chronic inflammatory conditions may originate as a series of back pains, but gradually can progress to restrict mobility in the pelvis and spine. In the worst instance, the disease can lead to the complete fusion of joints. Other symptoms include neck aches, reduced lung capacity, the stiffening of the rib cage and exhaustion.
Originally from Co Sligo, Mooney’s family set up the local cycling club, and he fondly recounts an active youth, swimming in Rosses Point and climbing mountains. After a nomadic few years working and living abroad, he returned to Ireland in 1997.
However, his life was about to alter dramatically.
“About two years later I started to become very sick,” says Mooney. “I had an accident when I was go-cart racing in Limerick with some friends. I cracked three ribs.”
In excruciating pain, Mooney attended several GPs, with the consensus being he had probably injured his back. “They started pumping me full with opiates to try and calm it down.” However, this did not alleviate his symptoms. “I wasn’t turning up for work, I was sleeping when I shouldn’t be sleeping.”
He recounts his breaking point. “One of the worst moments of my life was when I thought I was dead. My eyes closed, but I could see the world after taking two valiums to kill the pain. I thought, ‘do you know what, I can’t do this’.”
He returned to his GP and requested to be taken off his medication. This led to further complications, as to alleviate his pain, he was prescribed a high dosage of painkillers. “High dosages of painkillers interfere with the lining of your intestine and everything else, and you lose your ability to eat. I went from being a 105kg (16st 7lb) guy down to 70kg (11st), and I’m about 6ft 3in-6ft 4in.”
The mental and physical toll of AS started to erode his quality of life. “I was getting very down. You start thinking, ‘who is ever going to want to be with me’. You are in pain even going for a pint. To lift up a pint of cider used to give me pain in my rib cage.”
Despite being in a constant state of agony, what appears to have resonated most with Mooney is the lack of empathy. “No one could diagnose what was wrong with me. Some people thought I had Aids, some people thought I was hallucinating – that there was nothing wrong with me because there was nothing physical as a key.”
Instead of succumbing to the pain and ignorance of those around him, Mooney persevered in seeking out a correct diagnosis, knowing his issues went beyond back pain. He visited another GP who sent him to an orthopaedic consultant and he finally received an answer. “Five seconds after he opened my file he took out the X-ray and saw the problem and diagnosed me on the spot with AS.”
Although relieved, there was now a new reality to face. “He said this is what you’ve got, and his words to me were, ‘Rory, unfortunately, there is no cure and it gets worse’. It was a moment in your life when you are like, ‘oh sweet God, this is it’.”
Mooney was referred to rheumatologist consultant Dr Darragh Foley-Nolan, who prescribed the correct anti-inflammatories. He was told to do as much exercise as possible – sitting was helping the joints to fuse.
“That was the first step for me in starting to get my mobility back,” says Mooney. He continued to work with Dr Foley-Nolan, exploring different forms of medication, and one day received a call about a then new, experimental drug called Remicade.
There are risks involved in engaging with experimental treatment. “I said you give me whatever,” says Mooney. “I don’t care. If it kills me, I don’t care.” The drug had an almost instantaneous effect “I don’t know if it is mind over body, but two hours later I got up and I’ve been pain-free since.”
A negative effect of the treatment has been the impact on Mooney’s immune system. “I get infections quite a lot, and it’s funny, my nine-month-old headbutted me the other day and I have a swollen lip now. I’m worried it is going to get infected.”
Mooney hopes over the next few years the drug will be refined, to ensure it only targets affected areas and not the whole body. “I’ve had a few reactions to the medication where I’ve had anaphylactic shocks and found myself being rushed into the hospital about to die.”
However, he is quick to defend the treatment, saying “the benefits of what has happened to me in getting the drug completely outweigh any issues”.
Mooney’s father suffered from AS and died at 49, when Rory was just 17. After a back injury at work, his life changed drastically. “His back never got better. He eventually went from being looking like a young man in his early 40s to looking like a 70-year-old at 49.”
His father died of a heart attack, which in hindsight Mooney feels is attributed to lack of exercise due to the severity of his illness. “My father was carrying a lot of weight when he passed away – he would have been a cyclist up to until the age of 40.”
Genomics Medicine Ireland (GMI) is working in association with University Hospital Limerick on the first research study into AS and nrAxSpa. The study is attempting to identify the underlying genetic factors shared amongst people with AS or nrAxsPA. The hope is that through identifying links, they can help diagnose the disease early on, predict severity and organise tailored treatments, or perhaps even a cure.
Mooney was asked by Dr Alexander Fraser, the principal investigator on the GMI study, to help with the project. “Nobody needs to go through what I’ve gone through with this disease, and I understand as an engineer and as a scientist that we can, with enough data, establish what is wrong. It’s not just Dr Fraser, I’m helping me, I’m helping my kids. They have a 50/50 chance of having this disease as well.”
Mooney lives with his partner and two children, has two full-time jobs, and has simple advice to those suspicious they may have AS or nrAxSpa. “If you think you are getting a weird type of stiffness, straight into your GP and don’t take no for an answer.”
The painful alternative of living without treatment sounds unimaginable. “I don’t know how to describe it. It would be like someone getting a hot poker on your tongue and just leaving it there.
“I am the luckiest man on this planet. I got off that bed that day after being crippled – absolutely in agony all over, thinking, I’ll never have a woman, I’m going to die, I’ll never work, how am I going to stay alive, how am I going to feed myself, all the things that you enjoy in life and take for granted.”
And now? “To be honest it’s not impacting my life. The only thing I can’t do is run. But I do everything – I walk fast, I climb mountains, I ride my bike, I play with the kids.”