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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.
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.
Advocacy is learning how to speak up for yourself while living with a disease. By doing so, you may get the information you need to make good decisions about your health and well-being. Being your own advocate involves finding support, knowing your rights, and learning how to solve problems. Most people with a lifelong disease such as cystinosis learn how to become an advocate, and you can, too.
Some ways to make sure you are ready to speak up include:
Cystinosis United is a place for resources and support to help patients, caregivers, and others learn more about cystinosis. It’s part of our commitment to provide ongoing help to people affected by cystinosis and to connect them to the cystinosis community.
If you have questions about cystinosis, use this informational download to start a conversation with your healthcare provider. When you better understand cystinosis, you can educate those around you and build the network of support you need.
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.
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.
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.
You can check how much you have learned by taking a fun interactive quiz.
Sometimes medical terms can be tough to understand. But learning the words used to talk about cystinosis may help you be clear with doctors, family, and friends. This glossary is a great place to start.
