Personal Stories

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 a complicated, rare disease”. The first installment in the series is called ‘Super Cysteamine Team’. It takes readers on a […]

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 feeling ill and undergoing surgery, Eeshar has always been at school whenever he can. “What really impresses me is the […]

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 his wife Alex, who explain their thoughts at the time of Morven’s diagnosis and their hope for the future.

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 her experiences she can help people who are now going through the same situations that she went through when her […]

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 Rickets’ is an uplifting and true tale of Jessica’s life-long journey with the disease. Jessica is donating all proceeds from […]

Facing the prospect of a major organ transplant is a big enough ordeal in itself. Knowing that the organ was donated from a person who died creates a whole new host of challenges to overcome. Do you want to know from whom the organ was donated? How do you feel about this person? How will […]

Twenty year-old Sarah Laing has Cystinosis. Her story and the research being undertaken at Sunderland University, not far from where Sarah lives, are told on a short ITV television broadcast. To see the full video, please visit ITV.com. The Cystinosis Foundation UK has helped fund the projects at Sunderland and this story highlights the importance […]

Morven, daughter of Alex and Neil Hutchison, was diagnosed with Cystinosis at 9 months old. Since the diagnosis the family, who live in West Linton, south of Edinburgh, have been very keen to support the Cystinosis Foundation UK. Their story is currently featured in the local paper, Peebleshire News, and in a few weeks Neil […]

It was in 1990 that Sue Scott took the decision to donate a kidney to her daughter, Serena, who has Cystinosis. Now, in 2011, the Scott family are celebrating the 21st anniversary of the transplant that has transformed Serena’s life. Serena has no doubt this operation saved her life, as she was already suffering from […]

Lena Forsyth was diagnosed with Cystinosis at 7 months old, changing the life of the Forsyth family of Mintlaw, near Peterhead, forever. However, the whole family rose to the challenge of dealing with Cystinosis and began fundraising to help improve treatments. Lena’s father, Roy, joined the Cystinosis Foundation UK committee and became the Foundation’s chairperson […]