Goals of managing cystinosis

Targeting cystinosis treatment goals

Managing your cystinosis is key to living the fullest life possible. The best way to do this is to take steps that may delay or limit cystinosis from damaging the body. And the only way to possibly delay or limit damage is to keep your cystine levels low.

One of the hardest things about managing cystinosis is staying motivated to prevent future health issues. This is particularly true when you feel fine. In fact, you can't feel the cystine building up in your cells. Instead, cystine buildup slowly damages the body and may lead to more serious issues over time. That's why it's important to keep cystine levels low—not just now and then but all the time. Making cystinosis management goals and sticking to them can help.

Achieving your goals

Work with your doctor and healthcare team to define your cystinosis management goals. And stick with them. Start by:

  • Learning about your disease
    • Learn what cystinosis is and what it does to your body
    • Learn about cystine and why it's so important to keep cystine levels low
    • Understand the disease well enough to be able to explain it to others in simple terms. Learn more
  • Knowing your treatment options
    • Understand how and when to take your medicine, how well your current treatment works for you, and when to speak to your doctor about making a change. Find out more
    • Understand your treatment options. Learn about one medicine that may be right for you
  • Creating a treatment plan
    • Make sure you take your medicine as prescribed to manage your cystine levels
    • If necessary, consider your options for dealing with side effects of your cystinosis medicine
  • Sticking to your treatment schedule
    • Take your medicines every day, on time, and as instructed by your doctor. Taking your medicine on time helps keep your cystine levels low
    • Remind yourself by setting alarms on your smartphone, downloading a treatment schedule app (like Medisafe medication reminder), or keeping a calendar
  • Tracking your progress
    • Track cystine levels with testing. This is the only way you and your doctor know how well your cystine levels are managed. Find out how

Community is key

You know it's important to manage cystinosis every day, but you also know how challenging it is. The cystinosis community—other people living with cystinosis and their families—can help you stick to your goals. People like you understand these challenges better than anyone else.

Join the community on Facebook

Make friends, and reach out to them when you need help. Check out the cystinosis resources available to help you do this. Find out more.

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