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Cystinosis and your kidneys

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Cystinosis is a rare, multisystem genetic disease that accounts for nearly 5% of all childhood cases of kidney failure. Cystinosis occurs in only about 1 in 100,000-200,000 children, so it is not widely known nor understood.
Medically reviewed by
AKF's Medical Advisory Committee
Last updated
January 29, 2022

How does cystinosis affect your kidneys?

Cystinosis happens when cystine, a component of protein, builds up in your body's cells. Having too much cystine can damage your organs including your kidneys, eyes, pancreas, liver, and brain. Cystinosis can lead to permanent kidney damage and kidney failure.  The disease is caused by mutations in the CTNS gene which can be passed down from parents to their children. There is no cure for cystinosis, but there are medicines to treat the symptoms, and to help lower the level of cystine your body makes.

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FOR PARENTS

Access cystinosis resources for parents

The diagnosis of kidney disease due to cystinosis can be overwhelming and even unexpected. As a parent, it is normal to feel a wide range of emotions as you adjust to this news and what it will mean for your child and your family. Learn how to best support your child with cystinosis.

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Prepare for your next virtual doctor visit

Telehealth lets you see your doctor from home – or wherever you are. Download this guide for tips on how to prepare for your next virtual visit. If you do not have a computer or internet access, the Cystinosis Research Network (CRN) and PCs for People may be able to help. Learn more here.

Download doctor guide
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FOR TEENS

Cystinosis information for teens

Cystinosis is a rare genetic condition. A genetic condition means that it is passed down through families. Learn more about how cystinosis can affect your body and how to prepare for and manage a kidney transplant.

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How parents can help their child with cystinosis

  • Preparing for your child's transplant

    When your child's medical exams begin showing signs of decreasing kidney function, you should start preparing your child for a kidney transplant. Here are some important considerations for parents supporting a child through transplant.

    Up Next: Helping your child manage their kidney transplant

  • Helping your child manage their kidney transplant

    Receiving a new kidney is worthy of celebration! However, it is important to recognize that a transplant does not cure cystinosis and a new kidney comes with new responsibilities. After the transplant survey, your child will stay in the hospital for about a week to recover.

    Up Next: 5 tips on supporting your child with cystinosis

  • 5 tips on supporting your child with cystinosis

    Cystinosis is a rare, multisystem genetic disease that accounts for nearly 5% of all childhood cases of kidney failure. Cystinosis occurs in only about 1 in 100,000-200,000 children, so it is not widely known nor understood. Cystinosis can be tough on children, but there are ways you can support them and help them cope. Here are a few tips for parents supporting a child with cystinosis.