Rare Disease Day means a lot to me. As somebody living with a rare disease I love to see how this day brings the community together. We might not all have the same condition, but there is an understanding: We struggle with similar issues, fears and hopes. It can feel very isolating at times living with Duchenne muscular dystrophy (DMD), so having a day where we as a wider community come together, speak up and show support for one another means so much.
Honestly, most of the time I do focus on my disease, as it’s my daily reality. But rare disease day shows me that there are so many of us out there. All getting on with our lives with rare conditions. Some are visible, some are invisible, some are well known, but so many are not recognized at all. It really does put things in perspective for me and shows me that I am a part of a huge wider community that is way bigger than just my own life with Duchenne.
Helping families feel less alone
Speaking out about Duchenne is very important to me. Since 2020, I have been using my own platform to share my story. I talk about my life with Duchenne as I want to be visible for my community — for those who may not have been as lucky as me with the progression of the condition, or to help families with kids who have just been diagnosed see there is a life to live beyond this disease.
But on Rare Disease Day I really try to reflect on a deeper level and think about the good things in my life. For me, it isn’t just about raising awareness but to show how far I have come. Despite all the things I’ve been through within my life, I keep going no matter the obstacles.
I really hope that it will help other kids who have to go through similar experiences as I did. Growing up with Duchenne is scary at times. When your body doesn’t work the way you want it too you feel so different than everybody else, and that can be very confusing. If I’m able to help just one kid or family feel less alone, then it’s worth it.
Knowledge opens the door to better care
I also hope that raising awareness will help push forward research and funding, and hopefully lead us closer to finding a cure for Duchenne.
I feel awareness isn’t just about people knowing the name of the condition. It’s really important for people to understand what it means to live with it. It’s all about early diagnosis, good supports and access to the right services as soon as possible.
I was diagnosed when I was 3 and a half years old and I was lucky to have a great team around me as a child. Looking back, the support really made a huge difference when I was young, but not everybody is as lucky. That’s something that has to change.
Mental health, I feel, is an element of rare diseases people forget. It’s not all about the effects on your body. It can be emotionally draining and confusing. Especially as time goes on, you really do become more aware of what Duchenne can mean for the future. It isn’t just you who is affected, either: It is the whole family. Watching your kid live with a progressive disease is heartbreaking. Early counselling and psychological support is as important in my mind as medical care.
Making the future a little bit brighter
Rare Disease Day gives me a reason to pause and reflect, but it also motivates me to keep using my voice. It reminds me why I started sharing my story in the first place. Awareness can lead to earlier diagnosis, better access to services and hopefully more support for kids in less developed countries. I feel it can help people feel seen and it can help build a sense of community in a world where rare diseases can make you feel invisible.
For me, Rare Disease Day is about connection, reflection and hope. Hope that future generations with Duchenne will have better treatments, better support, and maybe one day, a cure. Hope that no child or family will feel as alone as many of us have felt at some point. And hope that by continuing to speak out, we can play even a small part in making that future a little bit brighter.
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