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Transition was good. Everyone was friendly, helpful and caring


Sex & Relationships

As you grow up and develop important relationships with others, you may also find that this includes sexual relationships.

It is important to think about contraception as there can be risks with pregnancy if you have a metabolic condition. If you are getting contraception from your GP or other services, please tell them about your metabolic condition to help them make the right decisions for you.

Talking about your condition
When you first meet someone, your metabolic condition may be the last thing on your mind. However, there are a few things that it can be important to think about, which are covered in this section.

How do I tell them? For some people, talking about your condition will be easy and for others, it may be a little trickier. It can feel difficult to time when, what and how much to say. There is no right or wrong way to do this, but it may be easier to slowly let people know about your condition and how it affects you. You may not want to tell someone straight away and choose to wait until you feel ready, at your own pace.

Some people find it helpful to use natural triggers to start a conversation about your health, for example talking about your diet when eating. You may want to tell them a little bit of information first and, as you get to know them better, you can go into a bit more detail when you feel ready and at a pace which feels comfortable for you. Your metabolic team can help you to prepare for having these conversations.

Telling someone often depends on the individual and how much they want to know. They might ask you lots of questions or they might not want to know much information when you first meet. When telling them, it is important to remember you have lived with your condition for all your life, but for them this may be a completely new experience.

For some metabolic conditions you will need to have specific specialist pregnancy care and management to support you and your baby.

If you decide to start a family, your metabolic team will be able to support you and discuss the correct level of care for your pregnancy and your baby.

If you are female and have PKU pregnancy requires a high level of management and care even prior to conception. High phenylalanine levels during pregnancy can restrict the normal development of the unborn baby. This can cause permanent harm, such as brain damage (leading to learning difficulties), microcephaly (a small head), heart defects and a low birth weight. This damage is known as maternal PKU syndrome. With the right planning and support you can have a healthy pregnancy and so it is important to talk to your team if you are thinking about starting a family.

During your transition appointments your metabolic team will explain this in more detail to you. For more information you can also find information on the NSPKU website.