Personal Stories
We support our community through sharing your stories, your experiences and your answers. Read some of those stories here. Together, we are stronger every day.
From Patient to PhD: Cystinosis Advocate Begins Doctoral Journey and Reunites with CFUK-Donated Lab Equipment
A remarkable full-circle moment unfolded this autumn at Robert Gordon University (RGU), as adult cys…
Eloise’s story is a candid portrait of childhood with cystinosis—showing how family, honesty, and routine can empower a young girl to thrive.
Diagnosed at 18 months, Eloise lives with cystinosis. Her parents, Jenni and Tom, share the emotiona…
The relentless reality of living with cystinosis – A teenager having to deal with a daily 2am wake-up routine
Morven, a teenager from Scotland, living with cystinosis, tells more about life with the condition i…
Millie’s story is a powerful testament to perseverance and hope.
In this moving video feature from Metabolic Support UK, Millie and her parents share their journey o…
Lena’s journey from patient to biomedical scientist offers a rare and inspiring glimpse into life with cystinosis
Diagnosed with nephropathic cystinosis at just seven months old, Lena spent years navigating a compl…
Cystinosis Comic Book Series by Artist Kevin McCalla
The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who has c…