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 […]

Procysbi Available in Wales Following a decision by the ‘All Wales Therapeutics and Toxicology Centre’ Procysbi [...] Read more...
Latest News and Updates Webinar – 27th November 2021 Please join us on Saturday, 27th November at 2pm for our ‘Latest News and Updates’ [...] 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...
Please Subscribe to Our New Mailing List We are very excited to launch our new mailing list! By signing up for free at the link below [...] Read more...
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