UK (English)
Jonathan,managing PKU as an adult
It’s never too late to get back to care.
Many of the symptoms you may be feeling may be caused by high or unstable blood Phe levels. But you have the power to keep your blood Phe levels under control and make the most of your PKU management plan. You can start by restarting your PKU management at a PKU clinic.
We now know that PKU must be managed for life, which may be different than what you have been told in the past. So, no matter how long you’ve been off diet or away from the clinic, you may be able to see improvements in your symptoms.
When a friend or colleague asks about PKU, what do you say?
It might be easy to describe PKU as a dietary disorder, but PKU can have a big effect on the brain too.
So next time someone asks, tell them about the impact that PKU has on your brain. This will help them understand why it is so important to pay attention to the foods you eat.
How do you know if
Keep in mind
The symptoms of PKU can be difficult to identify and can happen slowly over time. And they can have a serious impact on your brain. That’s why check-ins with a clinic are so important.
If you have been feeling foggy, confused or anxious lately, it could be your PKU.