Goals of managing cystinosis

Targeting Ideal Cystine Levels Image

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 may 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
    • Discover what cystinosis is and what it does to your body
    • Find out about cystine and why it's so important to keep cystine levels low
    • Understand the disease well enough to explain it to others in simple terms. Understand more
  • Knowing your treatment options
  • 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 (such as Medisafe medication reminder), or keeping a calendar
  • Tracking your progress
    • Check cystine levels with testing. This is the only way you and your doctor will know how well your cystine levels are managed. Find out how

Support is key

You know it's important to manage cystinosis every day, but you also know how challenging it is. Fortunately, others living with cystinosis may help you stick to your goals. People like you understand the challenges of cystinosis better than anyone else.

Contact an advocacy organization to meet other cystinosis patients and their families. And be sure to follow Cystinosis United on Facebook for weekly tips that may help you manage your disease.

Stay connected

Get information about living with cystinosis by email.

Back to top