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WHY is it HARD?

The ONLY treatment for PKU adults is a highly restrictive life-long diet. NO meat, dairy, nuts/seeds, eggs, wheat, rice, grains, no meat substitutes, restricting vegetable and fruits. Food needs to be carefully weighed and calculated for protein content to ensure the daily allowance is not exceed.

Don’t believe us?

PKU is not an allergy, you do not have an allergic reaction or an anaphylactic reaction if by accident or on purpose you eat something high in protein. It’s the long-term effect that’s dangerous. This diet treatment avoids something horrible..brain damage.

To the outside world we are normal, however our dedication and persistence is truly highlighted when our lives are starkly contrasted with that of a non-treated PKU individual. Sometimes, just sometimes, it seems to bare so much weight. Whether that be:

  • Out with no suitable food choices, caught between eating something beyond your protein allowance or not eating at all
  • Forever planning and preparing your food
  • The guilt knowing the food you just ate might damage your brain
  • That feeling of insatiable hunger that I know so many people with PKU experience
  • The lethargy that kicks in if you don’t eat/have formula on time
  • The brain fog of high levels
  • Knowing other countries have access to more advanced treatment
  • Or just the disappointment when your dietary needs isn’t considered too
  • PKU Adult