Young artist shines light on hidden health crisis

As a toddler Dayna Mattchewson was diagnosed with the painful chronic illness, Juvenile Idiopathic Arthritis (JIA), and spent much of her childhood navigating not just the physical toll of the condition, but also the misunderstanding and disbelief of those around her.

Now, at the age of 20 she has stepped into an important role as the inaugural Youth Ambassador for the Juvenile Arthritis Foundation of Australia (JAFA) and has an important message: “Managing pain is challenging and can be unpredictable; it’s important that we speak up about it. I want others to know they’re not alone on this journey.” Dayna’s song ‘Butterfly’ - a powerful reflection on pain, identity, and resilience - was a turning point in her advocacy. Through music, media campaigns, and public events, she aims to challenge perceptions and connect with others living with JIA.

Juvenile arthritis is one of Australia’s most under-recognised chronic conditions. Affecting approximately 10,000 children and adolescents, this autoimmune disease can lead to joint damage, vision impairment, extreme fatigue, and life-altering pain. Despite the impact, public awareness remains low, support systems are patchy and diagnosis is often delayed, leaving many young people to face complex health challenges in silence.

Recently Dayna shared with Charity Journal some thoughts about her journey to address unanswered questions - Why has juvenile arthritis remained so hidden, even as it profoundly affects young lives? How can one cut through the digital cacophony and create real understanding and change? What practical reforms are still needed in healthcare, education, and government support?

A voice for early diagnosis

Miroslav Kapuscinski (MK): JAFA was established in response to the lack of adequate support for children with juvenile arthritis - a gap largely due to poor public awareness, despite the number of young people affected. How would you describe the heart of JAFA's mission in your own words?

Dayna Mattchewson (DM): JAFA’s mission is to raise awareness and press for earlier diagnosis for children with juvenile idiopathic arthritis (JIA), so these young people have improved outcomes and don't suffer as much later in life. We also provide support and connections for families and advocate for new medication to be made available on the Pharmaceutical Benefits Scheme (PBS).

MK: Your personal motivation to advocate for JAFA may seem obvious, but everyday challenges often derail even the best intentions. Could you share your journey - was there a defining moment, or did your involvement evolve gradually?

DM: I feel like the defining moment was when my song ‘Butterfly’ was released - it really felt like the start of my advocacy, since that is how JAFA found me and asked me to become an ambassador. I made the song in response to my physical and mental pain throughout the years, to spread awareness to my peers but also to show just how difficult and complex the condition can be.

MK: What are some of the emotional or social challenges young people with arthritis face that the public might not be aware of?

DM: I can only say from my own experiences, which may be different from other children with the same condition, depending on where it is in their body and how much it affects their daily life. For me, it makes it hard to do what most people find easy, like doing chores, getting up in the morning to go to school or going up stairs. I would also have to sit out of P.E. a lot, otherwise I’d end up in a wheelchair from the pain in my legs.

I was lucky with my friends, they never made me feel like an outsider and were always helping me when I needed it. They would be understanding and would even help me up or carry me sometimes if I couldn't walk.

I often faced challenges with my teachers because they didn't understand my condition. I was sometimes reprimanded for using the elevator, as I appeared fine despite being in significant pain.

Additionally, arriving at school on time was often impossible for me due to severe pain in my legs that made it difficult to move in the morning.

MK: What roles do young people with lived experience play in shaping JAFA's direction or campaigns

DM: Lived experiences, like mine, can help us understand the condition better and help spread awareness so we can get the proper treatment and funding. It helps other young people going through the same/similar thing to feel like they aren't alone and have people they can look up to, to see that this condition doesn't define who they are and that they can be whatever they want to be no matter how challenging it is.

MK: In navigating a complex landscape where so many factors impact practical outcomes for young people, what kind of support - or resistance - have you encountered from decision-makers?

DM: The support I have received from practitioners is helping me obtain medication under compassionate grounds; however, it has taken time to secure the supply due to extensive approval processes. I have a medical team that collaborates to ensure the best possible outcomes in managing my condition. They present me with various medication options and work closely with me to identify the most suitable and comfortable choice for my treatment.

It has taken me 17 years and has been extremely difficult to obtain approval for the NDIS, as juvenile arthritis should not be classified under the general category of arthritis. Although the condition includes "arthritis" in its name, it is not the same as osteoarthritis or osteoporosis. I believe juvenile arthritis deserves its own distinct category.

The challenges of sustained advocacy

MK: What are the biggest challenges JAFA faces in raising awareness about juvenile arthritis in Australia, and what are JAFA's top priorities for the coming years? Are there any upcoming initiatives or events that you're particularly excited about?

DM: Funding is a big challenge. I have been involved in some amazing initiatives over the past year, such as attending Parliament House and meeting the Federal Health Minister, Mr Mark Butler, and attending afternoon tea with our Patron, The Governor-General, Her Excellency the Honourable Ms Sam Mostyn AC, with other JAFA families and stakeholders. I’ve also attended JAFA’s Juvenile Arthritis Consumer Conference about Pain Management, held at the South Australian Health and Medical Research Centre, with speakers in the medical field and invited guests.

I have also supported JAFA’s annual media campaigns for Juvenile Arthritis Week in March and World Arthritis Day in October as a spokesperson to share my experience and help raise awareness.

MK: How do you use social media or digital platforms to raise awareness and connect with others in the community?

DM: JAFA uses Facebook and Instagram to organise events where young people with JIA and parents can meet up with each other to grow connections. We also use it to spread awareness about online symposiums with experts to help people better understand JIA. JAFA also has its own website that helps raise awareness around the condition, providing information to help families and doctors to find the correct resources.

MK: If you could change one thing about how juvenile arthritis is perceived or treated in Australia, what would it be?

DM: That it is a disability even though you cannot see it; just because we look fine doesn’t mean we always are.

MK: How does your artistic work support your outlook and advocacy? Has your advocacy role changed you personally?

DM: I used my experiences to write a song to help other young people who are affected by JIA to know they are not alone and that we can get through this, even if some days it seems like we can't do anything. The advocacy has helped me find more confidence in myself and become a bit more independent.

Transforming Perceptions

In a healthcare system that often fails to recognise hidden disabilities, Dayna's work with JAFA represents more than awareness - it's a fundamental shift toward understanding that youth and chronic illness can coexist.

Moreover, accommodation isn't a weakness, and that the voices of young patients must be central to any meaningful reform. A very pertinent consideration in view of the ongoing discussions about the shape of NDIS. It’s a call to all of us to help ensure that young people don’t suffer in silence and receive appropriate support.

Dayna’s butterfly has truly emerged with wings strong enough to carry herself and our community toward a more compassionate future.