Watching the Ireland rugby international James Lowe galloping up the wing, ball in hand, it’s hard to believe he had debilitating arthritis as a teenager.
“At the worst times there would be days I would wake up and I could barely walk because my ankles were swollen,” he says.
It had escalated from initially feeling very rundown to being unable to get out of bed. Then he would be fine for a while, before suddenly not being able to hold a knife and fork to eat his dinner. “It was a real weird one,” he says in a new video released by Arthritis Ireland for World Young Rheumatic Diseases Day at the weekend. It is part of a campaign to raise awareness of juvenile arthritis and offer hope to the estimated 1,200-1,400 children in Ireland coping with this autoimmune condition that has many different forms.
“I knew my gran had arthritis in her hands, but I didn’t think kids could get arthritis,” says the 30-year-old of a “confusing” two years during his adolescence in Nelson on New Zealand’s South Island. He underwent many hospital tests before the cause of his symptoms was finally diagnosed and then it took time until doctors could find the right medication for him.
For a sports-mad teenager, not being able to play the games he loved was hard to take. There were days when his father would be called out of work at lunchtime to collect his son from school because he was too exhausted to last the day. “My friends had no idea what was going on, they thought I was taking the piss,” he told Matt Cooper in a 2019 Newstalk interview as a Leinster player, before he had qualified to play for Ireland in November 2020. But he reckoned this experience of illness helped him develop resilience. “I learnt then that life is a little unfair – bad things happen to good people and it is how you deal with it.”
Those little things affect him. He just wants to be the same as everybody else
In the current video, he says, “I know arthritis affects you physically but there was no way I felt this was going to stop me one bit. I found regular activity was awesome for me, it made me feel good.”
Lowe’s involvement in this campaign guarantees that many more people in this country, and beyond, will learn that arthritis is not just an older person’s disease. To see how he could put that period of ill health behind him is also a great morale boost for youngsters, such as 12-year-old Adam McCarthy from Glandore in west Cork, who are going through something similar.
Adam, who appears alongside Lowe in the video, was 10 when he was diagnosed with systemic juvenile arthritis, one of the less common types. The discovery came after he had become very ill in December 2021 with what turned out to be macrophage activation syndrome (MAS), a very rare complication of his condition.
In Adam’s case, says his mother Sandra, the first signs were not pains in the joints, which would be typical symptoms of juvenile idiopathic arthritis (JIA). He had been just getting over a chest infection when he started having pain in his back and running high temperatures at night, which did not respond to paracetamol and ibuprofen. There were several visits to the emergency department of Cork University Hospital (CUH) before he was admitted overnight and referred on to Crumlin children’s hospital in Dublin.
“He went downhill so quickly,” she recalls. It took numerous blood tests – along with ultrasounds, X-rays, MRI, bone marrow test, lumbar puncture – before medical staff could pinpoint the cause. After MAS, an inflammatory response that was affecting his liver and kidney, was identified, they were told that it would be only a matter of time before the arthritis would raise its head.
Adam spent six weeks in Crumlin, where he was treated with high doses of steroids and immunosuppressants. Then back home, within months as predicted, he started complaining about pains in his knees and his wrists.
“He is currently still on a daily injection to keep the MAS under control and he is on a weekly injection of methotrexate for the joints.” He attends CUH for monthly blood tests and must go to Crumlin every three months for check-ups.
Adam has plenty of good days but there are down days “when he is just fed up”, says Sandra. Inevitably there are times when he wonders “why me?”. But a play therapist in Bantry is proving to be invaluable in helping him to cope with the emotional challenges.
Like Lowe, he is big into sport: GAA, soccer, swimming and playing golf with his father Kevin. It was hard for Adam last summer when he could only manage 10-15 minutes in a match because he was tiring quickly.
“Those little things affect him. He just wants to be the same as everybody else,” says Sandra. As her son explains himself in the video: “I have tried to hide it away and not let people in on the full story, so they treat me the same and don’t give me any special treatment because of what I’ve had”.
The invisible nature of the condition means, “it is so hard to explain to people that there are issues and there are problems; nobody else can see it”, says his mother.
[ The 'twilight zone' of caring for a child without any legal status ]
[ It's incredibly isolating to have a child with a rare diesease. It feels exhausting. ]
[ Six Nations: The Aviva needs to be at fever pitch for Grand Slam decider ]
At home, morning routines before school are more complicated now that he must have an injection, take tablets and do about 10 minutes of exercise to keep his joints loosened and working well. Adam having a pain or a raised temperature is not as simple as it used to be either for his parents.
Where once you’d be advising him just to rest his sore arm or leg, says Sandra, “now you’re double thinking, is it the joint pain starting, is it a flare up?” Children with JIA are on immunosuppressants so they are more liable to pick up infections and slower to fight them off.
“Last week Adam was sick; where before it might take him two, three, four days to get over it, now it’s eight, nine or 10 days before he shakes it off completely.” If he is on antibiotics, he can’t take his weekly injection.
“Sometimes it’s a vicious circle. It can be tough.” But both Adam and his parents benefit from peer support through the “fantastic” children’s arthritis group iCAN, says Sandra. They also greatly enjoyed a recent family camp at Barretstown in Co Kildare and at Easter, Adam will be returning there with his sister Sarah (17) and brother Mark (15) for a siblings’ camp.
Meanwhile, he’s now a video star. Sitting shoulder to shoulder with James Lowe, the pair advise other youngsters with juvenile arthritis that they will get through it. It is going to take time, so be patient, says Lowe, who can now add, 16 years later: “I came out the other side pretty good”.
No rugby fan in Ireland is going to dispute that right now.