Perthes disease - Musculoskeletal Health Australia (MHA)

17/Mar/2025

Bella and Mikayla on World Young Rheumatic Diseases Day (WORD Day) 2025.

In honour of World Young Rheumatic Diseases Day (WORD Day), Isabella Fitzgibbon (Bella) and Mikayla O’Neil, two young women living with musculoskeletal conditions sat down together to discuss life with musculoskeletal disease, their roles at Musculoskeletal Health Australia (MHA), and the important role WORD Day plays in raising awareness of musculoskeletal conditions in young people and in driving change.

Mikayla: Bella, I’ve heard you are a keen cricketer! What are your other interests?

Bella: Yes, I grew up playing cricket and enjoyed a couple of seasons of County Cricket in the UK, but I have always been an active person and enjoy taking part in fitness challenges. Last year, I ran my first marathon, I am not sure what 2025’s challenge will be, maybe a sprint triathlon, or a sub 60 10k….watch this space!

Beyond sport, I am studying Health Promotions at university, I rate myself as a chef and I enjoy spending time with my very BIG family!

So, tell me Mikayla, what are your passions or interests?

Mikayla: I am the youngest of four and from the beautiful coastal town of Warrnambool. My partner Bailey and I have been together for six years and I have two adorable cats, Tom and Juanita. Fun fact– I have the coolest birthday ever: 01/01/01!

One of my biggest passions is my Instagram page dedicated to chronic illness. It’s a space where I connect with others going through similar challenges, offering support and sharing what we’ve learned. Community makes such a difference when living with a chronic illness.

I also love dancing and calisthenics. While my rheumatoid arthritis means I can’t participate anymore, I still love supporting my local club. And when I need to unwind, you’ll find me binge-watching Real Housewives—New York, Beverly Hills, and Orange County are my favourites!

Now Bella, you said you ran a marathon and love sports… but I thought you had a musculoskeletal condition?

Bella: Yeah, I do! At eleven, I was diagnosed with SCFE which stands for, now wait for it… slipped capital femoral epiphysis – don’t try to say that when you have been having a few drinks, and had multiple surgeries. Now, I have severe osteoarthritis in my hip. Luckily, most days, it doesn’t stop me from doing what I love, but there are weeks when the pain flares up. I’m learning to listen to my body and ease off when I need to… although, I have to admit, I get inspired by Mylo’s muscles, so that’s easier said than done!

Speaking of Mylo, who’s your favourite World’s Biggest Sit-In mascot and why?

Mikayla: Jonty T Joint, for sure! She resonates with my condition the most, and her motto of slow and steady really speaks to me. It’s about making the most of exercise while building strength and flexibility—something I totally relate to!

Bella: My 4-year-old niece Bethany loves Jonty too! But Oli, my 6 year old nephew is a HUGE Mylo fan!

So, I know you had a surgery earlier this year, but I don’t know much about your musculoskeletal condition. Would you mind sharing a little bit about your msk journey with me?

Mikayla: Absolutely!

I have Rheumatoid Arthritis and Fibromyalgia, which makes every day unpredictable. Pain has shaped my journey—from missing out on social activities to school struggles, university challenges and employment opportunities being impacted, I have learnt that adapting to each day is key however it isn’t always easy.

I’ve had two joints fused, recently had the Darrach Procedure on my wrist, and I’m now preparing for two joint replacements in my right hand. It’s a tough road, but I keep pushing forward. I’m so grateful for the support of my friends and value the role community, particularly MHA plays in living with a musculoskeletal condition.

Bella: That sounds really tough, and I know that I have often felt like I am the only one going through something like this but…that’s not the case. You’re absolutely right—a strong, supportive community makes all the difference, especially on the hardest days.

We both joined the MHA team last year, and I love working on advocacy and awareness projects, especially using social media to make an impact. What does your day-to-day look like at MHA?

Mikayla: I volunteered with MHA for 3.5 years before officially joining last year. Now, I contribute to projects, sit on the Consumer Advisory Committee, and help run our Teen Talk support group for 13–20 year olds. It’s incredibly rewarding to use my lived experience to drive real change in musculoskeletal health.

Bella: I know – it’s great that MHA values lived experience and has given us both the opportunity to have a real impact. March 18th was World Young Rheumatic Diseases Day (WORD Day), and this year’s theme is Empower to Thrive. It’s an interesting theme don’t you think? If you think about it, I know when I feel empowered I do way better…What does that mean to you?

Mikayla: I know how frustrating pain can be, but to me, Empower to Thrive means not just living with arthritis, but instead through accessing the power of community and support, living a life where you achieve your full potential. I believe when we have the right tools and people around us, we build confidence, self-advocacy, and a sense of fulfilment.

Bella: I love that term self-advocacy, Mikayla, because I think when you live with chronic pain and musculoskeletal conditions you have to be your own advocate and champion…for your health and for others! Thriving isn’t about ignoring pain, it’s about finding what works for you, educating and empowering yourself, increasing your understanding and health literacy and making it count.

To me, Empower to Thrive means giving people the tools and confidence to live fully, with their condition. It’s not just about ‘getting by’—it’s about finding ways to keep moving, doing what you love, and knowing you’re not alone. I’m so excited about the work we’re doing at MHA to make this a reality!

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The theme of this year’s WORD Day, “Empower to Thrive,” resonates with these young women who are using their experience to drive change and make a difference for others living with musculoskeletal disease. As part of the MHA team, their dedication to advocacy and raising awareness is helping others find the tools and confidence to live fully, no matter what challenges they face.

MORE INFORMATION

Musculoskeletal Health Australia

13/Mar/2025

A journey of overcoming challenges and finding opportunities

Written by Tim Allen.

Living with Perthes’ disease has presented numerous challenges, especially during my school years and early 20s. However, despite the limitations imposed by this condition, I never lost my fascination for life and my desire to experience everything the world has to offer.

When I was 6 years old, my mother noticed I was beginning to limp, and that it was uncomfortable for me to move. I was diagnosed with Perthes’ disease and pretty quickly underwent surgery and had a plate inserted and my legs cast in a splint. I had a frame and got around in a wheelchair for a bit. My friends and class mates coined the nickname ‘Timmeh’ after South Park’s Timmy, but not once did it ever feel like bullying. I was lucky enough to have a good bunch of friends, and although they probably had no idea what I was going through, they were supportive and kind.

When I came out of the cast and splint, I had to sit out from all sports, even non-contact sports, due to the pressure on my right hip. While I longed to play football, basketball, and skateboard like the other kids, my condition made it difficult. It was hard to understand at the time, but it would set me up for a really meaningful life. Not being able to participate in high-impact sports and the communities around them was challenging, but it presented me with other unique opportunities and experiences, which I’m incredibly grateful for.

One of those drivers was to become creative, and I began to develop interests in art, music, photography and computers. While I wasn’t aware of it at the time, the life that these interests would present to me would allow me to see, travel, and experience more than I could imagine.

I had always been interested in photography, playing around with the family camera and looking through the hundreds of 6x4s in family photo albums. Full of birthdays, events and family holidays my teenage brain was in overdrive! My grandparents on both sides amazed me with all the places they went, and I enjoyed looking into this portal into the past. What would my future look like?

I really wanted to play the drums and did for a while, however, it became more and more difficult to deal with the pain. I knew I had to be selective about my interests and focus on what I enjoyed. Photography became my number one passion.

Some of the more severe instances of pain I experienced were on extremely hot and cold days during my early 20s. I had become a little complacent as I developed from my teen years into early adulthood and thought my hip was strong enough to bear my weight and movement and do most of the things I wanted to do. I was wrong. The pain would present as a sensation of expansion and contraction which aligned with the weather conditions. I used a heat bag to sooth the pain and looked for ways to build the muscle once the conditions had settled.

Referred pain became more common, and I knew I’d have to step up my game. I began a program of light exercise, walking, stretching, and breathing techniques. Gradually the pain began to lift, and I became more mobile. The solution was making these activities fun, encouraging me to build them into my routine, resulting in regular exercise and a much healthier lifestyle.

Having Perthes’ disease helped me realise that without it, I wouldn’t have found the drive to develop myself as I did. And I wouldn’t have met the circle of people who are now lifelong friends. I knew my journey would be different, so I learned to embrace that. I attribute much of my success to the support of my family and friends. They’ve always encouraged me to keep moving forward and just keep moving!

Living with Perthes’ Disease isn’t always easy. But it’s taught me to embrace challenges and find opportunities where others may not see them. I’m grateful for the lifelong friendships and the unique opportunities and experiences they presented to me. I hope sharing my story can inspire others living with similar conditions to keep looking forward and making the most of every moment.

Originally written and published in April 2023