Caiti Brown, 22, refuses to let perthes disease dictate her life. Photo / Supplied
Caiti Brown, 22, refuses to let perthes disease dictate her life. Photo / Supplied
New research hopes to prevent hundreds of children living with perthes disease from suffering chronic pain.
Every year around 50 Kiwi kids are diagnosed with perthes - a condition where insufficient blood supply causes cells in the hip joint to die, damaging movement and causing crippling pain.
University student Caiti Brown was diagnosed with perthes when she was 5 years old and was now looking at a hip replacement at the age of 22.
This research was sadly too late for Brown but she said it would be life-changing for the future generation of children living with perthes.
"It would mean that if I have children and they get the disease they wouldn't have to feel the pain I do everyday and they wouldn't have to rely on high-dose painkillers."
For the last two and half years University of Otago Christchurch-based orthopaedic surgeon Dr David Kieser has been working on a treatment that would prevent the progression of perthes.
Kieser said it would not cure the disease but it could work as a preventative measure for children in the initial stages by stopping the collapse of the femoral head - the highest part of the thigh bone.
"You only have to see one young child with great ambition who then subsequently at the age of 16 has already undergone several operations and now needs their first hip replacement, that's enough to drive you to help people," Kieser said.
The treatment had been tested on piglets as a pretrial model and Kieser's team hoped to launch a clinical trial some time next year.
Kieser said basically children could get an injection in the hip when they were first diagnosed to open up the blood supply and stop the disease from progressing.
Unfortunately Brown didn't have that option.
After nine invasive surgeries, two full body casts and one leg cast, her condition has progressed into arthritis. All the cartilage in her left hip had gone, leaving bone on bone.
"It's sore when I wake up and it's sore when I go to sleep, so I don't really get a break from it," Brown said.
Caiti, aged 10 in the photo, would often be found horse riding as part of therapy. Photo / Supplied
As her condition was severe, Brown was now looking at getting a hip replacement which would give her movement back and alleviate some pain but it was a high-risk procedure.
Kieser said it was a operation they tried to avoid in young people as eventually it wears out and another replacement would be needed.
The more the hip had to be replaced, the poorer the outcome.
Despite it all, Brown doesn't let her condition dictate her life. In fact, she said perthes has made her who she is today.
The Victoria University student was studying biomedical science and psychology. She hopes to one day get stuck into research like Kiesers with the intention of making a difference in young people's lives.
On September 28, it's Cure Kids Red Nose Day and funds will be raised for vital child health research such as Kiesers'.
