Mum reveals toll on family as teen battles on
SHANITA Clark has proven herself a resilient individual, ignoring the painful effects of juvenile arthritis to claim the Australian Junior Masters tenpin bowling title.
"The arthritis doesn't get in the way, I don't let it," the 16-year-old said.
"I focus on the things I can do rather than the things I can't do."
Shanita faces a regime of injections and battles chronic pain but revealed time spent travelling for specialist treatment is one of the greatest challenges.
About 6000 children and young adults in NSW have juvenile arthritis but there are only two paediatric rheumatologists in the state and both are located in Sydney.
In a bid to improve access, Arthritis and Osteoporosis NSW has launched a campaign to increase awareness and funding for paediatric rheumatology services.
Until then, Shanita is required to travel to Brisbane every three months to see a specialist and she undergoes hydrotherapy in Grafton three times a week.
"I'm used to travelling so it's not too bad," she said.
"I don't know any difference so it just seems normal to me. I do miss out on a lot of school so that becomes an issue."
Shanita's mother Sharee said all the driving was hard on the family and the cost of travel, doctor's appointments and physiotherapy sessions added up.
"My husband and I take turns, it depends who can go, who has time off work," Mrs Clark said.
"It would be much easier if we didn't have to do the drive.
"I would like to see paediatric rheumatologists operating in the region in the future."
Mrs Clark said she would also like to see a paediatric therapist or psychologist in the area.