By Reza, Cystinosis, Iran, February 9, 2021
My name is Reza, I am a 13-year-old living with Cystinosis, in Iran with my family.
I love going to the cinema, watching movies and reading books. I am also very fond of singing and dancing and really enjoy happy music. I really want to become an actor! I like taking part in acting classes, I think I am ready to star in a movie.
Each year I join Cystinosis Symposium which helps me meet other people living with a rare disease and I make lots of new friends there. We talk to each other and share our stories.
Generally, I really enjoy going out and attending social events. However, my recent kidney transplant and the COVID-19 pandemic have restricted my ability to socialise with all my friends at the moment because I have to be extra careful. Sometimes joining art, music and other educational classes can be difficult. I enjoy my friends and others don’t pity me, they consider me a strong boy.
My parents and family members have my back. I appreciate the Rare Diseases Foundation of Iran (RADOIR), the Iranian Cystinosis community, my doctors, especially the ones who did my kidney transplant, and all the people who have helped me.
I will try my best to be a successful person in the future and make those around me happy.