I was diagnosed with Juvenile Dermatomyositis (JDM) when I was three years old. JDM is a juvenile form of Myositis, a rare group of autoimmune diseases affecting the muscles.
Mum and dad noticed something was wrong when I went from being an energetic and active boy, to wanting to go home and rest instead of running around like usual. My health declined rapidly over six months and I was soon diagnosed with JDM. Early on, I was prescribed two drugs. Initially, the condition started as a rash around my face and soon, my muscles became very weak. It wasn’t long before I could no longer walk. My health was at its worst between the ages of three and six.
As I grew older, I simply didn’t have the strength to perform or learn simple tasks such as being able to dress myself. As I got older, I found having a rare disease to be very isolating and the daily challenges remain difficult for the wider community to understand. Thankfully, I didn’t miss huge chunks of school as my condition was relatively under control by the time I went to primary school. I was surrounded by a great friendship group who were understanding and teachers who tried their best. I had a carer who helped me learn how to type. While there was the odd snide comment here and there from kids at school, I mostly only felt like an outsider when interacting with strangers. For example, when I’d be down at the beach with my family and a child would point at me and say something like, “Why is he so skinny?”
Thankfully, I have been in remission from JDM since I was eight years old (I am 40 now). Although common, remission from JDM means different things for different people. With the help of doctors and physiotherapists, I was able to learn to walk again (although I still walk with a limp), which was a significant milestone. I remember my parents incentivising me to walk from a young age. I’d get a piece of LEGO for taking a few more extra steps than the day before and something more significant for climbing steps. These days, every year, my health gets a little better and I feel a little stronger. I’m now enjoying great general health overall. While I sometimes worry about relapsing, I do my best to live life to the fullest and try not to think too far ahead.
Since being in remission from JDM, I have graduated from university with a Bachelor of Arts (International Relations), travelled overseas and am now currently involved in my family’s start-up business. When I was in my late 20s, I decided to connect with others living with Myositis. I wanted to help others in some way. For the past 10 years, I’ve been active as a member (including as a board member), for an Australian organisation comprised of volunteers that is raising awareness for people living with Myositis, RVA Partner, Myositis Association Australia (MAA). In my spare time, I enjoy playing guitar and composed a short tune for Rare Disease Day called, It’s not always fair to be rare. I am always interested in hearing other people’s journeys with rare disease, and I hope my story has helped you in some way.
It’s not always fair to be rare—a song Lachy composed for Rare Disease Day.
Lachy was one of our 2022 RVA Inaugural Ambassadors.
