Living With Cystinosis
Either being diagnosed with Cystinosis, or discovering a friend or family member has Cystinosis, is a frightening prospect. Due to the seriousness of the condition, its rarity and the fact it is currently incurable.
However, Cystinosis is treatable. Medicines do exist to manage Cystinosis and help is available to allow sufferers to live with a good quality of life.
The Cystinosis Foundation UK aims to help remove some of that fear through sharing of information and experiences as well as supporting those who have contact with Cystinosis. In this section of the site we outline the ways we try to assist and highlight other sources of help.
Every individual will undergo a different experience in their dealing with Cystinosis and we encourage you to join the Foundation to enable us broaden our knowledge and help others.
By helping each other, we can achieve our aim to be "forever growing"...
