MyoCon! September 24–27, 2026.
By Lachlan “Lachy” Beckett
I live a couple hours outside Sydney, Australia, and in my spare time I play guitar, compose music, and sing. These days, I spend a lot of time promoting myositis awareness, both in Australia and globally. But my journey with juvenile dermatomyositis (JDM) began many years ago when I first noticed a rash around my face, followed by muscle weakness.
I was lucky and received an accurate diagnosis very quickly. I know that isn’t everyone’s experience with myositis, and I remain grateful that my condition was recognized early. Even so, JDM affected all aspects of my life. During the time I had active disease, my muscle weakness became so severe that I was unable to walk.
When you’re faced with a condition like JDM, life changes quickly. You learn to adjust and find new ways of doing things. I have been fortunate to have great friends and family supporting me throughout my journey. They always encouraged me to pursue my passions and interests, including at school.
I was also fortunate to have a very good team of doctors. In particular, my GP and pediatrician were able to answer questions we had and were always supportive. When you are dealing with a rare disease, having healthcare professionals who listen, communicate, and provide reassurance can be invaluable. I have no doubt that my medical team contributed to my remission.
Today, that remission has lasted 36 years. While I sometimes worry about relapsing, I try not to think too far ahead. Instead, I focus on the present and on the things that bring meaning and enjoyment to my life.
Over the years, I’ve learned that the various forms of myositis can present very differently from one individual to another. I know a number of people living with forms of juvenile myositis, and they are all affected in quite different ways. That’s one reason why it’s important not to compare your journey too closely with someone else’s. Every patient’s experience is unique.
When I was diagnosed, there was no local support group available for people with juvenile myositis. Fortunately, things have changed. Patients and families now have more opportunities to connect with others who understand what they are going through. I am active in a couple of support groups myself, and I value the sense of community they provide.
If there is one piece of advice I would give to someone newly diagnosed, it would be to keep things simple. Appreciate the simple things such as the sun shining, the birds singing, and a good book. Those everyday moments can provide comfort and perspective, especially during difficult times.
I would also say that, for juvenile myositis, the outcomes are generally pretty good. You’ve just got to be patient and hang in there. Find the best people you can to help you on the journey, and educate yourself about the condition as much as you can.
My journey with JDM has shaped who I am today. It taught me resilience, gratitude, and the importance of community. More than three decades into remission, I remain committed to raising awareness of myositis and helping others understand that even when the road is difficult, there is reason for hope.
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