Take the Ammonia Survey

The ammonia levels that cause symptoms are different for every person living with a urea cycle disorder (UCD). What people have in common is the need to safely manage their ammonia levels. Take this quick survey to see how you’re managing your symptoms.

1What are some of the challenges you or your loved one has faced when it comes to living with a urea cycle disorder? (select all that apply)

Controlling ammonia levels Balancing between eating too much/too little protein Watching to make sure loved one doesn’t sneak food Trying not to get sick (eg, catching a cold) Frequent headaches Often feeling tired Regularly feeling confused Loss of appetite

2Have you or your loved one ever had a hyperammonemic crisis due to a urea cycle disorder?

3Have you or your loved one ever been rushed to the hospital emergency room because of a urea cycle disorder?

4If you had to estimate, how well do you think you’ve been controlling your or your loved one’s ammonia levels?

5When was the last time you or your loved one had your ammonia levels checked?

6Do you or your loved one take medication(s) and/or medical foods exactly as your doctor prescribed to manage ammonia levels associated with a UCD?

7Have you ever discussed a UCD treatment approach to help control ammonia levels, like nitrogen-scavenging medicines, with your or your loved one’s doctor?

1 I/my loved one has faced the following challenges living with a urea cycle disorder.
2 I/my loved one had a hyperammonemic crisis due to a urea cycle disorder.
3 I/my loved one been rushed to the hospital emergency room because of a urea cycle disorder.
4 I/my loved one believes ammonia levels are controlled.
5 I/my loved one had ammonia levels checked
6 I/my loved one takes medication(s) and/or medical foods as prescribed.
7 I/my loved one discussed treatment, such as nitrogen-scavenging medicine, with my doctor.

Talking to your healthcare team

The more you share with your healthcare team about your urea cycle disorder, 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 levels 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?

Take the Ammonia Survey

The ammonia levels that cause symptoms are different for every person living with a urea cycle disorder (UCD). What people have in common is the need to safely manage their ammonia levels. Take this quick survey to see how you’re managing your symptoms.

1What are some of the challenges you or your loved one has faced when it comes to living with a urea cycle disorder? (select all that apply)

2Have you or your loved one ever had a hyperammonemic crisis due to a urea cycle disorder?

3Have you or your loved one ever been rushed to the hospital emergency room because of a urea cycle disorder?

4If you had to estimate, how well do you think you’ve been controlling your or your loved one’s ammonia levels?

5When was the last time you or your loved one had your ammonia levels checked?

6Do you or your loved one take medication(s) and/or medical foods exactly as your doctor prescribed to manage ammonia levels associated with a UCD?

7Have you ever discussed a UCD treatment approach to help control ammonia levels, like nitrogen-scavenging medicines, with your or your loved one’s doctor?

Are you sure you want to leave?

Are you sure you want to quit the survey without completing it?

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 and ammonia management.