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SPRING 2025 InTouch | 15 For many years, I suspected something wasn’t quite right with my body. I was never very sporty growing up, often struggled to keep up with my peers at school, and didn’t feel physically strong. Still, I had no idea that these experiences could be connected to my role as a carrier of Duchenne Muscular Dystrophy (DMD). I knew I was a carrier as my brother and my son both have Duchenne, but I had never heard of the termmanifesting carrier. That changed when I met another member through MDANZ. Discovering that you can be a manifesting carrier is a journey that often comes with more questions than answers. This is Joy’s story of finding out, living with the condition, and learning to advocate for herself along the way. Living as a Manifesting Carrier of Duchenne Oddly enough, receiving the diagnosis brought relief...it wasn’t all in my head! I finally had an explanation for what I had been experiencing all along. Living with the condition At this stage, my symptoms don’t affect me too badly, but they are part of my daily life. I can’t walk long distances, so I use a power chair when I need to cover more ground. Sometimes my legs simply give way, and I find myself on the floor. My arms often feel weak, which makes who understand has been incredibly valuable. One of the most important lessons I’ve learned is that you know your body best. If you feel something is wrong, keep pushing for answers. If one doctor dismisses you, seek a second, third, or even fourth opinion. Unfortunately, information about manifesting carriers is still limited, but that makes it even more important to advocate for yourself. Looking back, I can see that I’ve always been physically weaker and not very sporty, and I suspect my mum was the same. If you’re experiencing similar challenges, don’t ignore your instincts. Don’t let anyone dismiss your concerns, and don’t dismiss yourself either. Trust your body and your experience as you are the expert on your own life. Oddly enough, receiving the diagnosis brought relief... it wasn’t all in my head! I finally had an explanation for what I had been experiencing all along. Above: Joy with her late son, Bradley. She explained the symptoms and experiences of manifesting carriers, and suddenly so many pieces of my life made sense. Motivated by this new knowledge, I went to my doctor to raise my concerns. Unfortunately, my worries were dismissed and put down to “just getting older.” A few years later, while in hospital for something unrelated, I mentioned my symptoms to one of the doctors there. He took it seriously, did some inquiries, and confirmed that I was indeed showing signs of being a manifesting carrier of Duchenne. opening bottles, lifting groceries, or even simple tasks much harder than they should be. My legs sometimes feel like jelly, and I deal with occasional muscle cramps, especially at night. Despite these challenges, I take each day as it comes and focus on what I can do rather than what I can’t. MDANZ has been a vital source of information and connection for me. It was through the Association that I even discovered what a manifesting carrier is, and connecting with others YOUR CONDITION IN REVIEW