UCDs affect everyone differently and at different times. Someone whose UCD is being well managed with diet and medicine may have long periods of time without a hyperammonemic crisis. Additionally, UCDs aren’t something you can see, like a broken leg or an allergic reaction. A UCD is always there, but it can be easy to forget about it when someone looks healthy and hasn’t been sick in a while.
Listen to two women talk about what it’s like to live with a disease that people can’t see.
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It’s important to know that UCD symptoms can happen any time and that people with UCDs are always at risk for a medical emergency if something triggers a rise in their ammonia levels.