If you’re an OTC carrier or think you might be, this page is for YOU. It was created based on the stories of carriers at different stages of life. Many OTC carriers experience symptoms like migraines, exhaustion, mood swings, heat intolerance, or feeling sick after eating protein. What they don’t know is that those symptoms may be caused by OTC.
“Everything just clicked as to why I’d been having these symptoms since I was a child, and no one could ever find answers for them. I felt relief to know OTC was the answer.”
– Aubrey
If you’re an OTC carrier, it’s time to know if symptoms you experience are really OTC-related. Use this page to help you evaluate your symptoms, hear from other OTC carriers who have been where you are, and learn what kinds of questions to ask your doctor. Now they know—do you?
Every OTC carrier story is different, but these women have learned one thing from their experience: knowledge is power. See how a little learning went a long way in helping them take control of their lives and enabling them to make informed choices about their health.
Carriers Aren’t “Just Carriers”
Some people have the wrong idea when they hear the word carrier. Some think carriers aren’t sick or don’t have symptoms. And some think if they don’t have symptoms now, they won’t have them later either. Everyone is different. Listen to what Aubrey, Marie, and Frankie learned once they found out they were OTC carriers to help them manage their OTC and their life better.
Having to constantly explain OTC to the people around you—even your doctors!—can be exhausting, so we created a resource to help. Below you’ll find two different worksheets. One is to share with people like family, friends, and co-workers, and one to share with people on your healthcare team, like your primary care physician or OB/GYN, who might not be as familiar with OTC.
Each worksheet gives a brief description of OTC and what it means to be a carrier, it also has space for you to fill in important information about the support and care you may need when it comes to making healthcare decisions that could be impacted by your OTC.
If someone in your family has been diagnosed with OTC, use this OTC Symptom Survey to see if you've been experiencing any OTC-related symptoms. Be sure to share your results with your doctor. If you have been having symptoms, your doctor can talk to you about a management plan that's right for you.
The OTC Family Tree can help you see who in your family may be at risk for OTC deficiency. Take a few minutes to fill it out, then review it with your doctor or genetic counselor to see who in your family should be tested for the OTC gene.
Some OTC carriers experience symptoms for some time before they even know they are carriers or that it is damaging their health.
Even people with mild OTC can experience hyperammonemia (too much ammonia) at any age.
There are things you can do to help keep these symptoms under control. An OTC management plan may help!
Carriers may have less severe OTC, which means they may not experience hyperammonemic crises often or even ever. BUT this doesn’t mean carriers don’t experience high levels of ammonia!
View video about the long-term effects of high ammonia in the body
There are also programs available to help people afford a genetic test. The UCD Genetic Testing Program provides access to genetic testing for people suspected of having OTC and their family members at no cost.
