Explaining PKU to Others (Teens)

When starting a new venture in life, for example starting at a new school or college or beginning a new hobby, it can be useful to think about if you want to tell  the people around you about your PKU and what that means in terms of your everyday life. 

Think in advance about how you would explain PKU to others. Maybe practice with a close friend or family member that can listen and help you or if you feel comfortable contact your metabolic team to help you get started. It may be useful to include examples you think they can relate to. Explain your PKU as an allergy or intolerance to a part of protein which means you have a very strict diet which includes a very small amount of natural protein. You could explain that you get the rest of your protein from a protein substitute which contains a type you can tolerate.  People tend to be more aware of food allergies, so this may help them understand. You could explain that you get some food on prescription similarly to how someone with Coeliac disease would.  

If you are starting at university and are living in halls of residence, inform the university before you start as you may be able to request a larger room or a fridge for storage of your PKU products. When starting university, explaining PKU to your new friends may be of help for when you cook and eat together or when you eat out. For example, a pasta dish may easily be adapted with your own low protein pasta. When you eat out, it might be a good idea to look up the menu ahead of time so that you can prepare accordingly.  

For more hints and tips about starting university or college, click here.  

When going on a date or starting a new relationship you may want to think about how you will explain your PKU, especially as dates often involve food! Maybe keep it simple and explain you need to follow a special diet that is like having an allergy or intolerance. It is up to you how much or little you explain. 

For more information about dating with PKU, click here.