Phenylketonuria (PKU)

Phenylketonuria (PKU) is an inherited disorder that increases the levels of a substance called phenylalanine in the blood. Phenylalanine is a building block of proteins (an amino acid) that is obtained through the diet. It is found in all proteins and in some artificial sweeteners. If PKU is not treated, phenylalanine can build up to harmful levels in the body, causing intellectual disability and other serious health problems.

Brynnslee and Brekelle

This precious picture was taken after the birth of my 2nd who also was diagnosed with PKU right after birth. It symbolizes the bond that these 2 sisters will always have..going through life facing all the food and medical issues

Read more

Jordan

My story is a sad one. I am a parent of a PKU individual. My son was born June 17, 1985, diagnosed with PKU at 3 weeks of age. He was immediately started on a PKU formula and progressed to

Read more

Declan

My son is currently ten years old. When he was first born, his father’s health insurance through work wouldn’t cover this low protein foods. Thankfully, the formula only was covered through a program. I met a young family of a

Read more

Isabel

I have two daughters. Only the younger one has PKU. We struggle to find foods that Isabel can eat. Medical foods are incredibly expensive, and our insurance plan, which is otherwise good, is exempt from state mandates which should provide

Read more
The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.