It’s important to note that everyone develops at different stages and some of these tips and suggestions may be more relevant at different times as you move through your teenage years.
- Aim to follow a varied and colourful low protein diet, while taking your protein substitute as recommended by your metabolic team to help get the right nourishment. Your diet works for both your body and mind – when you take your protein substitute and keep to a low protein diet this can make a marked difference to your energy, concentration and mood.
- Be aware of your food choices and what affects them – sometimes your thoughts and feelings can affect how you eat and view yourself. If this applies to you, then you might find that keeping a “food and symptom” diary can help you pinpoint the effects that your feelings have on your food choices.
- Keep active - physical activity is so important to feel good. Choose activities you enjoy and can do with your friends, so it doesn’t feel like a chore – it’s meant to be enjoyable! Regular exercise is great for your body and your mind, it boosts your mood, gives you more energy as well as relieving stress and anxiety and increases the hormones needed to feel good! Being active can also be helpful to break up long periods of sitting and studying and help energise you.
- Spend time with your family and friends – having good relationships with those that you love and care for is important. Keeping in touch with your friends with PKU is also a good idea as they will probably be going through similar situations and you can share experiences, knowing that they’ll understand. PKU social media groups can help with meeting others with PKU and keeping in touch if your friends don’t live close by.
- Keep up to date with PKU – by attending your appointments with your metabolic team, subscribing to the National Society of Phenylketonuria (NSPKU) digital newsletter and going to PKU conferences you can keep up to date on new protein substitutes, new prescription foods, exchange updates, new or future treatment/management developments and much more.
- Beware of alcohol and other drugs – Learning about the effects of alcohol is part of growing up. Drinking too much can have negative effects on your health and wellbeing. Be aware that taking illicit drugs might affect your mental health.
- Tune into your eating, maybe try “Mindful Eating” – take your time to eat and limit distraction for a short while e.g. try putting your phone in your pocket for 10 minutes to get the most out of your meal. There may be some free apps you can download to help with mindfulness.
- Keep in touch with your local metabolic team as they are the main source of advice and support with managing your PKU. Doing this independently of your parents or caregivers can feel daunting at first but is an important part of taking responsibility for yourself. Plus, there might be things that you want to ask the team that you don’t want others, including your parents, to know.
- Support others – volunteer your time and do something nice for someone. Sharing your experiences with PKU is a great way to support others.
- Try something new – this can help you feel good about yourself and give you a sense of achievement, e.g. learn to cook your favourite low protein meal or even cook this for your friends!
- Ensure you get plenty of sleep – lots of sleep significantly helps with both the wellbeing of your body and mind. Too little sleep can make you grumpy or snappy and effect your concentration span in school or college, which could impact on your relationships and make schoolwork harder.
All in all, just remember to have fun, accept who you are and don’t compare yourself to others – we’re all unique, so remember to also accept others for who they are too.
If you are worried about difficult feelings or thoughts, talking to someone such as an adult you trust and feel comfortable with, can make a big difference and is helpful in getting things into perspective. Just sharing your concerns with someone you trust, for example, your parents, family members, GP or metabolic team, can help lighten the load sometimes.
Not sure who to talk to? If you don’t want to speak to someone face to face find some websites below for further information and support.
Young Minds is a UK charity specialising in supporting and empowering young minds whatever the challenges.
NSPKU and Metabolic Support UK are there for information and support with your PKU.
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