Personal Stories
- Cystinosis Comic Book Series by Artist Kevin McCallaThe 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… Cystinosis Comic Book Series by Artist Kevin McCalla
- Derby Moor Student an Inspiration to Us AllDerby 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… Derby Moor Student an Inspiration to Us All
- Morven’s StoryMorven 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.
- Tina Biss Shares Her Tips for ParentsWe’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… Tina Biss Shares Her Tips for Parents
- Jessica Jondle Publishes Book About Life With CystinosisJessica 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… Jessica Jondle Publishes Book About Life With Cystinosis