Sofia’s story
Generally thought of as an adult disease, it might surprise you to know that 1 in 800 Australian children are affected by juvenile arthritis and other rheumatic diseases.
Rachelle said, “we were completely shocked when Sofia was diagnosed, because we’d never heard of arthritis in children. We thought it was a disease that only affected older people.”
For children, early diagnosis and treatment is essential to prevent irreversible damage to joints and organs and to ensure their development progresses normally.
Rheumatic inflammatory disease can be very debilitating with the child experiencing pain, join swelling and stiffness, lethargy and exhaustion. It can disrupt a child’s schooling and their sporting and social lives.
In addition, managing any chronic illness can impact the lives of families caring for kids with this condition. For the Allen family, who live in a regional area and run their own business, it means a monthly round trip to Westmead, and lots of juggling to arrange care for Sofia’s younger sibling.
It also takes time to find the right medication for each patient, which often come with side effects. Some days Sofia struggles to walk; however, recently she trialled a new medication and her Mum and Dad saw her run for the first time in months.
‘I just burst into tears to see her run’, Rachelle says.
