Myoclonus Dystonia
Hi, my name is Valeria, after 20 years, I was diagnosed with a rare syndrome called myoclonus dystonia. Even though it’s not degenerative, it affects your quality of life. I was diagnosed on December 2nd of 2019. I was first wrongly diagnosed at age 4 with cerebral palsy, but after years of having these muscle jerks that my family and I thought were just symptoms, I suspected there could be something more. The whole year of 2019, I went from specialist to specialist, including a neurologist. Finally, towards the end of the year, my doctor recommended a genetic test. That’s when my life changed. It’s taken me a while to process, due to the fact that I have already tried doing 3 treatments to calm these involuntary movements but medication seems to make it worse. Now I have a horrible writing cramp. I get depressed and cry sometimes and I feel like it has messed with my mental health, but the point is... If you’re going through the same, you’re not alone. I’m here to share my story and my journey to having a better quality of life. It is possible to overcome and I have the will to do it, I am happy now that I know what the problem is and I can deal with it.
