It’s devastating to discover that your child has arthritis, a disease which you thought only old people could get. But some 12,500 children in the UK live with the juvenile form of a serious condition which can turn family life upside-down.
Babies, toddlers, tots, teens – children and young people of all ages can develop juvenile idiopathic arthritis (JIA), leaving mums and dads in turmoil as to what to do, and where to turn for help.
To mark Mother’s Day, Arthritis Care is offering a special free service for mums who suspect that their child may have juvenile arthritis, or for whom a diagnosis has been given.
‘We run a free helpline called The Source for children with arthritis and their parents, and for the week following Mothering Sunday, we’ll offer to send mums who ring in for information and support, a free copy of the book ‘Kids with Arthritis’, a really comprehensive guide for anyone involved in the care and support of a child with JIA’, said Jo Cumming, helplines manager at Arthritis Care.
The helping handbook is by Carrie Britton, who was an occupational therapist in rheumatology, when her elder daughter developed severe arthritis at the age of two. It addresses most practical issues for families of children aged between six months and 13 years.
All members of the family are affected by the illness of a child, but mothers seem to bear the brunt of becoming a ‘parent carer’.
One father said: ‘I think it hits mothers hardest. They don’t get a break. I go to work and when I come home its bedtime. She’ll say “It’s been a really tough day”, and we’ll talk about it a bit, but I haven’t had it in my face like her, have I? She’s had the tears, the pain, the disturbed night, the doctors, appointments, the medicine, the exercises, the splints, the liaising with school and everything.’
‘We know how worn down mums get, because they share information, top tips, and discuss their worries and feelings with other mums on the Arthritis Care website message boards. That’s what gave us the idea of our ‘may the Source be with you’ week specially for mothers – and the giveaway book’, said Kate Llewelyn, Arthritis Care’s head of information services.
Parents who fear that their child has a serious illness experience desperate anxiety whilst awaiting the right diagnosis. Arthritis in children is difficult to diagnose, principally because the symptoms may fluctuate.
If tests show the child has JIA, there may be a mixture of relief that the condition has a label, but worry about what to do, and where to go for support when the public is generally unaware that children are affected by the disease. That’s where The Source freephone helpline comes in – it’s staffed by trained counsellors and offers confidential and direct support for young people, and also to the parents and families of kids with JIA.
Link to the website is www.arthritiscare.org.uk