Laura’s Story: living with Juvenile Arthritis

SEVENTEEN-year-old Bellingen High school student Laura McNeil is a passionate musician and youth leader.

She has also lived with Juvenile Arthritis since the age of nine.

Common signs of the disease include prolonged stiff, swollen or sore joints.

Laura is sharing her story during Juvenile Arthritis Awareness Week, 16–22 March, an initiative of the Juvenile Arthritis Foundation Australia.

For Laura, who is now a cellist in the Bellingen Youth Orchestra and a recent recipient of the Coffs Harbour Zonta International Young Women in Leadership Award, it has been a long road.

She began having issues around the age of seven with medical professionals initially thinking her symptoms were growing pains.

By the time she was referred to a rheumatologist, she had stopped eating hard foods due to jaw pain, while shoulder pain made hugging intolerable.

“A lot of my struggles over those two years were due to delays in diagnosis”, she said.

“I started with pain in one joint, and by the time of diagnosis, 60 joints were affected.

“Earlier intervention would have reduced trauma and allowed me to start treatment sooner.”

The delays, which included numerous trips to Sydney and different medications, affected her school attendance which dropped to 50 percent or less throughout years 5 and 6.

She also suffered from fatigue, pain and emotional distress.

Her mother, Roz Everson, recalls the challenge of seeing her daughter suffer, along with managing complex treatment schedules.

She was eventually forced to leave her job as a teacher, which added to the family’s financial pressures.

“You really start to doubt yourself when symptoms are dismissed,” she said of the diagnosis journey.

“One GP recognised arthritis immediately, which was validating.”

Juvenile Arthritis Foundation Australia was founded in 2019 by Professors Ruth Colagiuri AM and Stephen Colagiuri AO, after their grandchild was diagnosed with the disease.

JAFA’s focus is on raising awareness, fundraising, and supporting the families of the 30,000 young Australians living with Juvenile Idiopathic Arthritis and other childhood rheumatic diseases.

This year’s theme is “Kids Can’t Wait” and includes an online fundraiser and a media campaign.

For Roz, it’s crucial that other families learn from their experience.

“Families shouldn’t wait,” she said.

“If something feels wrong, seek another opinion. Early diagnosis and access to effective treatment can make a life-changing difference.”

By Jessica MILLER