PKU Organization of Illinois
Start: Apr 19, 2019 - End: Dec 31, 2019
The PKU Organization of Illinois was formed in 1969 by parents and medical staff from the PKU community hoping to be a resource to other families with PKU. This is still the case today. In addition to PKU families, we support teens, adults and those who have left diet who hope to return. In addition to PKU, we support 16 Allied Disorders.
PKU or Phenylketonuria is a rare inherited metabolic disorder caused by a gene defect. PKU occurs when an enzyme is missing or not working properly. This enzyme is responsible for breaking down or changing phenylalanine (phe) into other substances for proper brain and body development. Phe is found in almost every food, except pure fat and sugar. When Phe is not broken down it builds up and causes severe brain damage along with an array of other health problems. Those who have PKU need to maintain a strict low protein diet which typically consists of very expensive medical foods and formula. This diet must be maintained for life.
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