SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

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.

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