Juvenile arthritis: The Irish toddlers learning to cope with joint pain
Fresh thinking and public awareness can help youngsters living with condition
When my niece was only two-and-a-half years old she began getting pains in her legs. Initially, her parents weren't overly worried, suspecting she must have hurt herself while playing, and would heal up normally.
Several weeks passed and it became clear that something was seriously wrong. In a short space of time, Grace had gone from being a healthy and active toddler to one who couldn't even get out of bed in the morning.
Having developed normally, it was disturbing to see her limping about in pain. A visit to her GP was followed up by countless referrals, while we all waited anxiously for a prognosis that might explain her demise.
It's not fun seeing a child in pain, especially when you can't offer an explanation or solace. My sister-in-law and her husband had to carry their little girl around and push her in a buggy as she struggled with decreased mobility and exhaustion.
Grace was too small to tell them what was wrong, but her cries of pain while having a nappy changed left her parents in no doubt that things were bad.
A referral to the Rheumatology Department in Our Lady's Children's Hospital Crumlin eventually solved the mystery. Within minutes of meeting consultant paediatric rheumatologist Dr Orla Killeen, little Grace was diagnosed with juvenile arthritis. She had it in more than six places, including her knee, hip, wrist, elbows, jaws, and ankles.
We were shocked and astonished. Wasn't arthritis something you get in old age? I'd always associated it with joint pain and stiffness, the kind older generations are afflicted with. It seems cruel that a young child should have to endure such pain.
And it isn't just severe joint pain that affects sufferers of juvenile arthritis. Debilitating fatigue is part of the condition and can hamper participation in day-to-day activities, from sports to the simple enjoyment of a birthday party.
Something as effortless as jumping on their trampoline suddenly became a real challenge for Grace.
My little niece is a content, spirited little girl who simply gets on with things and her determination is admirable.
Her treatment began with steroids, which were gradually reduced before being stopped. A nurse also administered weekly injections to manage the pain before teaching Grace's dad how to give them.
Now, he injects her weekly and her parents can see a real improvement in her post-injection. Sadly they can also identify when the injection's benefits are wearing off, as their daughter's mobility deteriorates and her fatigue sets in.
Once Grace was diagnosed, her parents discovered Arthritis Ireland, which has a special helpline dedicated to families affected by juvenile arthritis.
One of their main activities is special family days, organised around the country to bring together other families and their little patients and siblings.
Doctors, nutritionists, physiotherapists, play therapists and occupational therapists come along to offer advice and support, and there's special entertainment for all the kids.
While my sister-in-law was initially nervous about attending, she soon discovered how reassuring it felt to be amongst others going through the same experience.
With juvenile arthritis firmly on my family's radar, it's been saddening to learn that 1,100 children under 16 are living with arthritis in Ireland.
No cure exists at present and it is not known what causes it.
A recent survey by Arthritis Ireland found that 41pc of parents who have children with the disease said their biggest fear was that their child won't have a normal life into adulthood.
Seventy per cent of parents also said that other adults are amazed to learn that the condition affects children in the first place.
Arthritis Ireland is campaigning to change this perception. With the help of Irish rugby player Devin Toner, they've just launched a fun campaign to raise public awareness about Children with Arthritis and raise urgent funds for support services to help children like little Grace.
For the month of May all businesses and communities are being invited Back to the School Yard to organise a day of old-style school yard games and raise funds for Children with Arthritis. Hopscotch or rounders, anyone?