Your Results

Bring the survey results to your next visit with your healthcare team. You can also use the tips below to start talking to your healthcare team about your urea cycle disorder (UCD) and ammonia management.

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  1. I/my loved one has faced the following challenges: {1} living with a urea cycle disorder.

  2. I/my loved one {2} had a hyperammonemic crisis due to a urea cycle disorder.

  3. I/my loved one {3} been rushed to the hospital emergency room because of a urea cycle disorder.

  4. I/my loved one believes my/their ammonia level is {4} controlled.

  5. I/my loved one had my/their ammonia level checked {5a}.

    I/my loved one {5b} when ammonia levels were last checked.

  6. I/my loved one {6} take(s) medication(s) and/or medical foods as prescribed.

  7. I/my loved one {7} discussed treatment, such as nitrogen-scavenging medicines, with my/their doctor.

Talking to Your Healthcare Team

The more you share with your healthcare team about your UCD, the more your healthcare team can help. Use these tips to start the conversation:

Share your concerns. Don’t be afraid to tell your healthcare team if you’re worried about your health.

Don’t be embarrassed. If you don’t understand, ask for a clear explanation because it’s better to know than to leave confused or unsure.

Be clear. Try not to say, “I don’t feel right.” Be specific. For example, “I have severe headaches after eating certain foods.”

Questions to Ask Your Healthcare Team

How am I doing compared to my last appointment?

How often should I have my ammonia level checked?

What are my options to help control symptoms related to my urea cycle disorder?

Are there risks or side effects with taking any of these medicines?