I’m Duygu Akdeniz from Izmir, Turkey. I’m 30 years old. I worked as a librarian at the Ministry of National Education until October 2021. I have Friedreich’s Ataxia. The diagnosis was made in 2004. Sadly, this condition is not well known in my country.
My iron deficiency required me to have iron infusions four times over the years. My doctors were unaware that my body was reacting and that I had an iron problem. In spite of my best efforts, I could not convince my doctors that my body would not be able to handle this. In the aftermath of each iron infusion, I was confined to bed. My health improved with time, but I was unable to regain my old strength. The last time I had an iron infusion was September 30, 2021. As a result, I am no longer able to participate in social activities. Consequently, I had to resign from my position. Even sitting is exhausting.
My summers were spent traveling to new places and seeing new things. This summer, I suffered from health problems. I enjoy reading and talking to young people. Besides that, I receive 90 minutes of physical therapy each week.
Through my experiences, I was able to gain a better understanding of this condition. Living with such a condition is challenging. It has been difficult for me and my family. In order to cope with ataxia, we need to understand and accept it. From my observations, I have found that I have never actually fully accepted my condition.
