Embracing life with Perthes’ disease

April 19, 2023 by Lisa Bywaters


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.

Tim is now working in the final stages of completing a Master of Arts Photography at Photography Studies College and will present his first debut solo show in June 2023. You can find more information through his website and social channels.

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