Living with cystinosis

The people who know the most about the challenges of living with cystinosis are those who experience it every day. That's why Cystinosis United has collected articles from people with cystinosis and their friends and families. Here, you'll find tips to help you face the daily challenges of cystinosis head on.

The self-care project: Being your best you

The self-care project is your guide to help you realize your full potential physically, mentally, and emotionally. Self-care is the best care. That’s why it’s important to challenge yourself by setting goals, improving your overall well-being, and finding motivation.

self-care-project self-care-project

Get a printed copy of the Self-Care
Project booklet

Whether you have been diagnosed with cystinosis or care for someone who has cystinosis, the tips, tools, and inspiration in this booklet will help you take control and be your best you. Download excerpts below to get started. Then order your Self-Care Project booklet today to begin living a healthier life.

Request your booklet


Begin your journey with tips from the Self-Care
Project booklet to help inspire and motivate you!

Below are a few tips and tools from the booklet to jump-start your self-care journey. Download these excerpts now and start prioritizing YOU.


Additional Resources for Parents and Caregivers

Caring for a child with cystinosis comes with a unique set of considerations that you face every day. Read more about resources available to you to help you manage these challenges.

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