Explaining PKU To Others

If you are returning to a low protein diet after not following it for some time or you are taking control of your diet for the first time, it can be useful to think about informing the people around you about why you are changing your diet and what this means to your everyday life. Your close friends and family could be a useful support at this time in your life. If you have a job, depending on the role, you may need to inform your employer of your PKU. In some cases, you may have to complete a medical questionnaire prior to starting your new role which involve explaining your PKU. If you do not have to inform your employer, it will be up to you to decide whether you think it will be beneficial to inform them and your colleagues about your change in diet. You will likely need to take some time off work for hospital appointments so them being aware about your PKU may make it easier to request leave. You may also need breaks to take your protein substitute and other specially manufactured low protein foods.

As PKU is a genetic disorder, when you are in a relationship with someone you may find it useful to be open about your PKU even if not actively following the diet. If you were to have children with someone without PKU the chance of you having a child with PKU is very low but still worth considering and talking about. Your own children may ask you why you are eating different foods to them, you could explain PKU to them using our Introduction to PKU guide.

It can be beneficial to 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. Most adults, especially if they have children of their own will be aware of the heel prick test that is done a few days after birth. This can be a good place to start when explaining PKU as it helps them to relate.

‘PKU is a rare genetic disorder, which is tested for a few days after birth (heel prick test). Someone who has PKU cannot tolerate a part of a protein called phenylalanine which means protein in their diet needs to be very restricted. Therefore, I need to follow a specific diet, getting some food on prescription similar to that of someone with coeliac disease. I get my protein from a protein substitute in the form of a drink/tablet/bar and small amounts of measured protein called phe exchanges’.