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Get the Facts About Phenylketonuria(PKU)

PKU is a genetic disorder that occurs when the body is unable to process an essential aminio acid, phenylalanine (PHE), which comes from the food we eat.

The buildup of PHE in the body is toxic to the brain and can cause severe mental retardation and other neurological problems

PKU is inherited from both parents

PKU affects one in every 14,000 babies born in the United States

The only treatment for PKU is to maintain a strict low-protein diet that must be started within the first few days of a child's life. All newborns receive screening for this disorder, while in the nursery

Not maintaining the diet increases the risk of learning and behavior problems, but when the diet is well-maintained children will develop normally. The diet is recommended to be continued throughout the person's entire life

A synthetic formula is used as a replacement for the eliminated high PHE foods

Foods high in phenylalanine include beans, fish, dairy, wheat, diet soda, eggs, and meat

Certain medications contain phenylalanine and have to be avoided or taken into account when planning dietary intake.  See the list here.

Learning that a child has PKU is a very stressful time for parents and families

The New England Connection for PKU and Allied Disorders in a non-profit organization that was created in 1995 to provide support for families and to increase awareness of the conditions.