Amir

My name is Amir Hossein Bagerzade. I am 26 years old, and for nearly nine years I have been living with a rare genetic disease. You may wonder why, after nine years, I am sharing my story now. The reason is simple: I live in a northwestern province of Iran, close to the border, where access to medical facilities and specialized care is very limited. In the early years of my illness, I never imagined it would become this severe and life-altering.

My symptoms first appeared when I was 17 years old, starting with tremors in my hands. At that time, I still had two years of high school left. Because of the tremors, I was often unable to take notes while my teachers were lecturing. Studying became extremely difficult, and my only option was to rely on memorization. Despite these challenges, I managed—through great effort—to graduate from high school successfully. However, as my symptoms worsened, I was unable to attend university.

At the age of 19, I traveled to Tehran for genetic testing. The results confirmed that my condition was genetic, and I was told that there was no cure. For many years, I lived in uncertainty. Even basic walking became difficult, yet with the help of my kind and supportive father, I went from one doctor’s office to another. The answer was always the same: there is no treatment. This cycle continued for years.

Eventually, through my own research, I found organizations such as the National Ataxia Foundation (NAF), CORDS, and other international centers. Reaching these communities gave me a sense of connection and hope—something I had been missing for a long time. Even if a treatment is never found for me, I truly hope that one will be found for future generations, so that no one else has to endure the same suffering. Despite everything, I continue to move forward and hold on, waiting for a good turning point—still hoping.