Personal Stories

Trevor Strauss’s 23-month-old daughter, Gabby, has Cystinosis and he is the founder of Canadian based charity CARE – Cystinosis Awareness Research. Trevor was recently interviewed for Canadian Rock 107’s Morning Show. You can view the full interview at Rock 107’s website.

16th February 2009 Lauren Ellis, Manchester My name is Lauren and I was diagnosed with Cystinosis when I was 18 months old. I was always a very sickly baby but when my mum took me to the GP he always gave the same excuse: “she’s just a normal baby”. When I should have started walking […]

Mrs Dale, Ridgeway School, Derby (www.ridgewayprimary.com) When I was first told that I was going to have a child with Cystinosis in my class, I have to admit I was clueless. It was a condition I had never heard of and, although it sounded like something ‘medical’, I really had no idea what to expect. […]

In 2001 Vicky and Roy Forsyth’s 7-month-old daughter suddenly fell ill as they were moving house. What was initially thought to be a bug, persisted and was eventually diagnosed as Cystinosis, turning their world upside down. Vicky, Roy and their daughter have had to learn to deal with a punishing medicine regime and uncertainty over […]

We’re Looking for New Trustees – Can You Help? Cystinosis Foundation UK is a charity that helps and supports people living with the rare [...] Read more...
National Cystinosis Study Day at QE Hospital, Birmingham The QE Hospital in Birmingham are hosting a ‘National Cystinosis Study Day’ on Saturday, 26th [...] Read more...
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 [...] Read more...
Newsletter – November 2012 Issue 21 of the Foundation newsletter has recently been finalised and is available to download [...] Read more...
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