A remarkable full-circle moment unfolded this autumn at Robert Gordon University (RGU), as adult cystinosis patient, Lena Forsyth, began her PhD in Trauma-Induced Coagulopathy at the School of Pharmacy Applied Sciences and Public Health –…
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,…
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…
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…
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…
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…
Derby Moor student Eeshar Seehra was thrilled to achieve 3 A Levels in Maths, Physics and Media. What makes this an exceptional achievement is the fact that he has the rare inherited disease Cystinosis. Despite…
Morven is a brave 5 year old girl who has cystinosis. Please watch this video for an insight into her day to day life. She is daughter to Cystinosis Foundation UK treasurer Neil Hutchison and…
We’re pleased to be able to share with you some tips written by Tina Biss for parents of children with cystinosis. Tina has a (now grown up) daughter with cystinosis and hopes that by sharing…
Jessica Jondle, 30, a teacher from California, USA, has written a book about her experiences of living with cystinosis. Diagnosed with cystinosis in 1983, when doctors gave her 10 years to live, ‘Roller skating with…