Community Discussion Forum Adults and PKU need advice Reply To: need advice

Avatar of Nick

Kuvan is a medication recently approved by the FDA in the US to treat PKU. Not all PKUers respond, as it boosts what ability a PKUer has to digest phe. If you have classic PKU it is less likely to work, as you may have less residual enzyme activity. I have variant (or moderate) PKU and respond well. As for going on the diet – you need to have your levels checked. The previous poster said she didn’t need to go on the diet during pregnancy as her levels were fine. That’s ok IF your levels are below 6 off-diet. If not, you NEED to be on-diet to prevent possible birth defects.

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional