In the morning, a typical teenager might have bacon and eggs with toast or a bowl of cereal with milk, but not Alyssa who will also have up to six different types of drugs with breakfast before going to school.
At the young age of 11, Alyssa was diagnosed with juvenile idiopathic arthritis, which forced her to stop playing basketball and squash – her favourite sports – because of the impact they have on her joints.
Her father, Nathan Pensini has been doing triathlons for 22 years but said no race compares to the pain his now 15-year-old daughter goes through each day.
“She’s been taking medication daily since being diagnosed,” Nathan explained. “One particular drug is quite extreme as it’s also used to treat cancer and has many side effects like hair loss, nausea and heart and liver complications.”
The week after Wold Arthritis Day, which is on Monday 12 October, Nathan will take part in his sixth Half (70.3) Ironman Triathlon under the campaign Racing for Alyssa & Ash, which aims to raise awareness and funds for juvenile arthritis.
“Alyssa’s arthritis affects her ankles, knees, wrists, neck, fingers and toes. She used to be on a special kind medication but because it costs the government $20,000 per injection the criteria is very strict and Alyssa is no longer eligible for treatment.”
Arthritis & Osteoporosis NSW CEO, Jannine Jackson, said Alyssa is one of over 6,000 children in New South Wales who struggle with juvenile arthritis.
“Juvenile arthritis is far more prevalent than most people realise,” Jannine said. “Even babies can be diagnosed, well before they are able to communicate the pain they’re experiencing.
“Some forms have mortality rates as high as 20 percent but despite those numbers, these children form a group that receives relatively little in the way of funding for research and treatment.
“Right now, there are only two paediatric rheumatologists (specialists in juvenile arthritis) in the state which means some children with severe conditions have to wait a year or more to see a specialist,” she said.
However, with a bit of help, many of these children could go on to better manage their condition and live full, normal lives.
To help raise awareness for the disease, Arthritis & Osteoporosis NSW is hosting an event called Our Joint in Sydney with the goal of breaking the Guinness World Record for the ‘largest gathering of skeletons.’
“Our Joint is an attempt to bring a more light-hearted approach to raising awareness for what is a very serious condition and it presents a great way to support children with juvenile arthritis,” Jannine said.
“It’s much harder to overlook bone and joint health when you and your family are dressed as skeletons!”
Our Joint will kick off the Halloween weekend on Friday, 30 October from 4pm-9pm and will be held at Dudley Page Reserve, Dover Heights with fantastic views of Sydney Harbour. Tickets are $40 – discounts apply for children, families and groups of 10 or more – and includes event entry, access to all entertainment including the haunted house, goodie bags and a free skeleton onesie to take part in breaking the Guinness World Record.
All proceeds will go towards support services, education and research into new treatments for arthritis and osteoporosis.
For media information and interviews, please contact Felipe Beltran on 02 9857 3330.