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Juvenile Arthritis is a childhood missed

Sixteen-year-old Macy Vaz has spent most of her life in crippling pain.

Diagnosed with Juvenile Arthritis in her left ankle and left knee when she was just two-years-old, the debilitating pain she has endured from such an early age has in many ways, forced her to miss her childhood.

“She has been put into a grown-up world at a very young age and has had to deal with what most people think is an old person’s disease,” Macy’s mother Karen said.

“I remember she woke up one morning and couldn’t walk so I took her to see the Doctor. They sent her to Princess Margaret Hospital to have blood tests but the tests came back inconclusive.”

After many frustrating medical appointments trying to find answers, Macy was eventually diagnosed six months later with Juvenile Arthritis.

“That was a very difficult time because I knew she was in pain but there was nothing I could do to help her. It was like…..What do I do now? Where do I go?”

Once diagnosed, Macy had to have regular injections and had to wear a cast at night. There were many times she was unable to walk and needed to be pushed in a pram. Slowly, her condition became a little more manageable but the high dosage meant over time she was left with no immune system.

A change in medication seemed to resolve the issue but it still wasn’t enough to prevent the challenges Macy had yet to face.

Her mother remembers during a trip to Melbourne, when Macy was just eleven-years-old, she was unable to walk when she came off the plane. A visit to the hospital soon informed them that her medications were no longer working, and the scan revealed she now had Avascular Necrosis.

Avascular Necrosis (AVN) also called osteonecrosis is a condition in which blood supply to the bone is disrupted and the bone dies. AVN usually affects large weight bearing joints such as the hips or knees but on occasion can affect the shoulders, ankles or wrists.

Karen started a diary to keep track of the numerous medical appointments and to also record how Macy was feeling each day, as the pain and physical limitations of living with Juvenile Arthritis was also affecting her mental health.

“She missed out in participating in playground activities as she was not able to run. She felt excluded by the other children because they didn’t understand why she couldn’t join in.”

And her condition became only more challenging during her teenage years.

“Arthritis has impacted our entire family – we can’t plan activities in advance because we don’t know how she will feel that day? We just have to take it day by day.”

Today, due to earlier diagnosis and more effective treatments, joint deformities in people with arthritis are less frequent and severe. This means arthritis is not easily visible and can often be misunderstood by younger children who may not understand why their classmate has to sit on the sideline during physical activities.

But soon there came a glimmer of hope when Macy began attending Camp Freedom, a camp specifically designed for children aged 7 – 17 years with Juvenile Arthritis.

“I love going to Camp Freedom – I look forward to going every year! It’s great to be with other children my age who are going through the same experience as me,” said Macy.

“I just wish it was held more than once a year!”

Arthritis & Osteoporosis WA (AOWA) run the 6-day camp which is sponsored by Lotterywest during the October school holidays. It provides the children an opportunity to learn about their condition in a safe and friendly environment. Children are encouraged to try new experiences in order to gain self-confidence, learn communication, cooperation and self-management.

“And the new JIA Support Group for Parents and Children held by AOWA has been very helpful as well. The Facebook Group Page has been a huge support for parents who need help and to also know they are not alone,” Karen said.

by Lily Lomma, Editor Arthritis Today magazine

You can help children like Macy create fun childhood memories…..

Consider making a donation to help us provide children living with arthritis, a chance to have fun and make life-long friends with other children who understand the challenges they are going through.

For many children, camp is the only opportunity in the year where they can truly be themselves in a non-judgmental environment.

Your donation will help us to cover the cost of a qualified Nurse to attend the camp, food and accommodation, transportation and equipment for group activities.

Please call us on 9388 2199 or 1800 011 041 or donate online on our website here


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