Diagnosed at 18 months, Eloise lives with cystinosis. Her parents, Jenni and Tom, share the emotional journey from diagnosis to daily management, including the challenges of foul-tasting medication, disrupted sleep, and the importance of early,… Eloise’s story is a candid portrait of childhood with cystinosis—showing how family, honesty, and routine can empower a young girl to thrive.

Morven, a teenager from Scotland, living with cystinosis, tells more about life with the condition in this feature written by Kidney Research UK. Morven and mum, Alex, share the emotional and physical toll of managing… The relentless reality of living with cystinosis – A teenager having to deal with a daily 2am wake-up routine

In this moving video feature from Metabolic Support UK, Millie and her parents share their journey of living with cystinosis. Despite the challenges of managing a complex treatment regimen and the looming threat of kidney… Millie’s story is a powerful testament to perseverance and hope.

Diagnosed with nephropathic cystinosis at just seven months old, Lena spent years navigating a complex regimen of medications, blood tests, and hospital visits. Her curiosity about what happened to her blood samples led her to… Lena’s journey from patient to biomedical scientist offers a rare and inspiring glimpse into life with cystinosis

The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who has cystinosis, to create a new comic book series that aims to “create a simple explanation for treating… Cystinosis Comic Book Series by Artist Kevin McCalla