Nevaeh’s Story

Nevaeh Lynn Stanford was diagnosed with Cystinosis at 17 months. Now a little over two, she is on medication that has begun improving the quality of her life. Her strict daily routine is still hard going for both Nevaeh and her parents, although Nevaeh is starting to help out…

More can be found about this American toddler at:
http://www.longmontfyi.com/Local-Story.asp?id=5431

Note: This article suggests that the life expectancy of a Cystinosis sufferer is only 20-30 years. Whilst this may have been the case in the past, it is not necessarily the situation now. These days, better understanding of the condition, leading to successful diagnosis and treatment, has meant life expectancy is greatly increased. For example, the Foundation has actively involved members who are Cystinosis sufferers and in their 40s.

Comments are closed.

New Cystinosis Study – CTNS Nonsense Mutation Screen The McGill University in Canada is looking for participants in Europe and North America for a [...] Read more...
Cystinosis Education Day, 19th September 2017 A ‘Cystinosis Patient and Clinician Education Day’ is being held on Tuesday 19th [...] Read more...
Derby Moor Student an Inspiration to Us All Derby Moor student Eeshar Seehra was thrilled to achieve 3 A Levels in Maths, Physics and [...] Read more...
Newsletter – November 2012 Issue 21 of the Foundation newsletter has recently been finalised and is available to download [...] Read more...
All website content copyright Cystinosis Foundation UK (Charity No.1074885) 1997-2013, except where explicitly stated.
Data Protection Act Registration Number: Z9880997. Please refer to our terms and conditions and our privacy policy.
site:bonnyday