I am Reza

The story of Reza

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.

 

*Find others with Cystinosis on RareConnect, the online platform for people affected by rare diseases

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