Cystinosis and me.

The story of Samantha

Hi, I’m Sam! I’m twenty five years old and I was diagnosed with Cystinosis when I was three. I had a kidney transplant when I was thirteen, and still take a lot of medication for various needs— high blood pressure, transplant meds, Cystinosis meds.

Although pandemic life has had me feeling very isolated, I am hoping to go to university soon and study photography. I’d love to be a director of photography and work on film sets when I graduate.

I like to post videos to my YouTube channel about Cystinosis and I try my best to advocate for other people like me. It’s a hard world to live in at the moment, but to know that I give hope to other families living with this condition makes me feel good.