Adults

You have been managing cystinosis since you were very young, and you know it’s a lifelong journey. This section will help you better understand your disease and how it can continue to affect your body, how to navigate treatments, and provide tips to help you face challenges head on and live well with cystinosis.

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Staying on course
during transplant

Whether you are getting ready for your first kidney transplant, or you have been through one before, use this guide to feel better prepared and informed.

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Get help
explaining cystinosis

Do you ever get tired of explaining to others what cystinosis is and how it affects you? We have created a video, “I Live with Cystinosis” which you can share with others to do the explaining for you!

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Staying on course
during dialysis

Dialysis may become an important milestone in your cystinosis journey. Use this guide to feel better prepared and informed and get helpful ideas on how to stay positive.

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The Self-Care
Project

The Self-Care Project is your guide to help you realize your full potential physically, mentally, and emotionally.  Self-care is the best care.

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Staying on course
while transitioning from
pediatric to adult health care

Transitioning to adult health care is an important milestone in the cystinosis journey. There are things you can do to help navigate your transition, be responsible for yourself, and maintain independence.

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Things I wish
my doctors knew

Use this handout to help your doctors better understand cystinosis and support your needs.

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Adults

UNDERSTANDING CYSTINOSIS

TREATING CYSTINOSIS

LIVING WITH CYSTINOSIS

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