Approximately 150 people in the UK and Eire have now been diagnosed with Cystinosis and approximately 30% of these
are now adults. This number is gradually increasing due to greater knowledge among medical practitioners in diagnosing
the condition in children. I, myself, am the oldest Cystinotic in the UK, born in December 1962. In fact, the number of adults with
this condition is growing due to successful research into the condition and the development of new drugs to stabilise the cystine
levels in the bodies of Cystinotics.
I have worked full-time most of my working life, but have now taken on the role of Founder of this organisation on a full-time basis. I wish to devote my life to my fellow Cystinosis patients and their families, who require tremendous support. The Cystinosis Foundation UK now has a board of five Trustees and in April 1999 achieved charity status.
The Cystinosis Foundation UK has been formed to fulfill the following aims:
To provide support to anyone diagnosed with Cystinosis, as well as the families and relatives. Parents and the adult patients will be offered information about the disorder and about referrals. They will also receive a regular newsletter and be invited to conferences organised by the Foundation and its supporting organisations.
To highlight the disorder to members, the medical profession (particularly at GP level) and the community as a whole through receptions, the regular medical conferences already organised and by distribution of literature so that children with the disorder can be identified more quickly.
To assist in the promotion of research into treatment and, hopefully, for a cure for Cystinosis.
To work 'at all times' alongside other similar organisations in understanding more about metabolic disorders in general. The Cystinosis Foundation UK will also work together with the Cystinosis Foundation USA to learn more about Cystinosis patients and their families' welfare.