I am writing to you today to share my dystonia story with you. For many of you, my journey may sound familiar. I was 10 when I first felt my right-hand twitch. Gradually, by the time I was 14, it was my left hand was beginning to turn in as well. It was grade nine and I was the different one, the girl with the strange twitches. The one that was suffering. The one that no one else understood.
Finally, I got my first dystonia diagnosis. It was idiopathic dystonia that began in my right hand: and strangely it felt like a relief to finally know what this thing was – even if when I spoke the words aloud, no one knew what they meant. At least I did. And like many of you I wondered what it meant for my life, and for the future that I thought I had all planned out. It has been 15 years since I first received that first diagnosis, and now I have a four-year-old and my struggle has changed.
Some days are hard. Some days I can’t get dressed properly. I can’t put on makeup properly. I can’t wash my hair or hold my daughter the way I want to….But I have hope.
What do I hope for? Its not about fixing my dystonia. I know what my options are. I’m optimistic but I’m also realistic. I’m looking to build my life, finding purpose, remaining positive.
They continue to fund research towards a cure for dystonia, to raise awareness of the disorder, and they aim to bring the dystonia community together – to empower us to be the best version of ourselves. But they are also investing in research that can help make our lives easier in the near term. In fact, recently, DMRF Canada launched two different research projects that are focused on improving lives for patients through the investigation of better clinical treatment options for dystonia.
That means that you and I have a chance at a better life with dystonia.
The Power of You.
Like all of you, I’ve been through the judgement, the stares, the looks, the curious faces, the skeptical friends. And like you, I’ve learned to be strong, to rise above and to want more for myself and for my family. I believe very strongly in the work of the DMRF Canada, and their vision to change lives for dystonia patients like you and. I encourage you to do what you can to support their mission to fund research for better treatments and a cure.
Thank you for your support,