Fighter Patrick gets on with life
DUNDALK TEEN LIVING WITH DOWNS SYNDROME AND JUVENILE ARTHRITIS
Dundalk teen Patrick Kehoe is one of 1,200 children and young people living with juvenile idiopathic arthritis in Ireland who are being let down due to lack of investment in paediatric rheumatology services.
Thirteen year old Patrick from Bay Estate, who has Downs Syndrome, was diagnosed with juvenile arthritis four years ago after breaking his femur while playing in the garden on Easter Sunday 2014.
His mother Elaine explains that at the time the family were unaware that children with Downs Syndrome are at greater risk of having juvenile idiopathic arthritis.
‘Patrick had been limping for about a year to eighteen months before that and it had got progressively worse but it was put down to low muscle tone,’ she recalls. ‘He was running in the garden when he fell and broke his femur and was taken to hospital.’
It was while there that his parents were told about a mobile clinic being run to see if children with Downs Syndrome had markers indicating that they would develop arthritis as adults.
‘We took Patrick to the clinic and were told that he actually had juvenile arthritis,’ says Elaine. Patrick was then referred to a consultant rheumatologist. ‘She told us that he had raging arthritis but because he’s non verbal he couldn’t tell us that he was in pain.’
‘We had no idea that he had arthritis or that it could be an issue,’ says Elaine.
Patrick is one of the lucky ones as his condition was picked up and he was booked in for treatment in Crumlin hospital three weeks later. He has since been diagnosed with osteopenia and his bones are thinning and eroding.
Patrick now receives injections to relieve his pain every two or three weeks and will be having an MRI in June to see if there’s active arthritis in his left wrist.
‘He’s a fighter and he gets on with things,’ says Elaine. ‘He loves going out in the garden with his sisters, playing his Playstation and watching DVDs.’
Elaine and her husband Martin are backing Arthritis Ire- land’s campaign for improved resources for children and teens living with juvenile idiopathic arthritis.
The number of children and young people under 16 waiting more than a year to see a consultant paediatric rheumatologist increased by 80% in the 12 months since January 2017. At the end of January 2018, 902 were on the rheumatology outpatient waiting list, a 33% increase on January 2017. This is despite the fact that international best practice indicates that patients with suspected JIA should be seen by a paediatric rheumatologist within six weeks of the referral being diagnosed.