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Welcome to
Cystinosis Life !
Meet 4 young people
who share with you
their experiences
and ideas on living with cystinosis.
Discover how Kirsty, Irati,
Mark and Geoffrey
became who they are.

Everyday life

Kirsty  in  London

"Whatever your life is, there's a way to do most things you want to do, like 99% of the things, you just have to slightly adapt them..."

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treatment

Irati in Bilbao

"Tomo la medicación y nunca la he abandonado porque si no la tomara no estaría aquí..."

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transition

Mark in Amsterdam

"What I have been through the last 26 years makes me the person I am today..."

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friends & family

Geoffrey in Paris

"La cystinose ce n'est absolument pas un blocage pour une vie amoureuse, il suffit juste de trouver... une personne assez intelligente pour comprendre... "

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