what does phenylketonuria mean What does phenylketonuria mean?

August 01, 2022

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Phenylketonuria (PKU) is a rare genetic disorder that affects approximately 1 in every 10,000 to 15,000 newborns in the United States. This condition occurs when the body cannot process the amino acid phenylalanine properly. Without proper treatment, PKU can lead to severe intellectual disability, seizures, and other health problems. The primary treatment for PKU is a strict low-phenylalanine diet. This diet involves avoiding foods and drinks that are high in protein, such as meat, fish, eggs, dairy products, and some grains. Instead, people with PKU must consume a special formula that is low in phenylalanine and provides all the necessary nutrients. Living with PKU can be challenging, but with proper treatment and support, people with PKU can lead normal, healthy lives. Here are some tips and strategies for managing PKU: 1. Follow your diet strictly. The most important aspect of managing PKU is to follow a low-phenylalanine diet strictly. Work with a registered dietitian who specializes in PKU to develop a personalized meal plan and learn about low-protein foods and recipes. 2. Monitor your phenylalanine levels. People with PKU need to have regular blood tests to monitor their blood phenylalanine levels. This will help to ensure that you are following your diet properly and that your treatment is on track. 3. Take your formula as prescribed. People with PKU need to take a special formula that is low in phenylalanine to ensure that they are getting all the necessary nutrients. It’s important to take this formula as prescribed and not to skip any doses. 4. Be prepared when eating out. Eating out can be challenging when you have PKU, as many restaurant foods are high in protein and phenylalanine. Before going out to eat, research the restaurant’s menu online or call ahead to ask if they offer any low-protein options. 5. Educate others. Many people are not familiar with PKU, so it’s important to educate others about the condition and how it affects your life. Talk to your friends, family, and co-workers about PKU and how they can help support you. Living with PKU can be challenging, but with the right treatment and support, people with PKU can lead healthy, happy lives. If you or someone you know has PKU, it’s important to seek out medical care and to work with a registered dietitian who specializes in PKU to develop a personalized treatment plan.

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