As an adult with PKU you may have been told as a child or a teenager that you no longer needed to follow a low protein diet.
Although some adults say they don’t feel any different to their norm when they have high phe levels, others do report problems when their phe levels are high and it is thought that the variability in cognitive outcomes in adults with PKU is linked to the variability in dietary adherence.
In Australia, Newborn screening for PKU began in the 1960’s. Therefore, the oldest individuals being treated for PKU are into their 60’s. It is generally well-accepted in Australia; the recommendation is Diet Treatment of PKU for Life.
Unfortunately, unplanned pregnancies do occur. Uncontrolled PKU (high blood Phe) in pregnant woman can have devastating effects on the unborn baby.