How friendships can help you manage PKU

Do you have friends who have PKU?

Having a child with PKU, or indeed having PKU yourself, isn’t always easy and having a support network is important. Friendships with families or other adults in the PKU can be some of the most supportive and fruitful in your life.

If you’ve ever been to a PKU event or conference, you will have seen how it is – a load of strangers who are bound together by PKU have an immediate bond.

Having someone else that truly understands what you’re going through, whether it be another parents to a child with PKU, a PKU teen or a PKU adult, is truly empowering. And while you should never offer or take medical advice, sometimes the only person who ‘gets it’ is someone who knows what it is to walk in your shoes.

This is what some of our followers have to say about the value of friendships in the PKU community:

AD: “My best friends son has PKU as well as my son (similar age). It’s nice to see them grow together and eat the same foods and for them not to be on their own, its also nice to have someone to talk to as a pku mum to share food ideas, good low pro finds and for all the ups and down that come with pku x i couldn’t be without her most days.”

NG: “[One of the best thing about PKU is] Meeting lots of different people from different backgrounds with the same disorder and making friends for life with these people.”

KB: Some of my closest friends in the world have PKU, like me, and when we met it was as if we’d known each other our whole lives. They get me. They understand the struggles I go through, and I understand theirs. We help each other, we support one another and sometimes we cry on each other’s shoulders. They’re my family. My PKU family. When I meet other people with PKU for the first time, it’s never awkward. It’s like meeting up with an old friend, and I will always be grateful for the friendships that PKU has given me.”

These words from our followers sum it up beautifully. Other people in the PKU community will get you. They understand your struggles, understand the wins when others might not, and they can help you advocate for yourself, too.

For children and teenagers, friendships with others with PKU are important because growing up with PKU can feel lonely. It doesn’t need to be, though! PKU conferences and events, and camps like the one held at Keswick every year, are a fantastic place to meet others. We guarantee you that you’ll make friends for life. Having friends with PKU gives a sense of belonging and of not being different. It can help to stay on track and to face the challenges that will inevitably come up.

What do your PKU friends mean to you? Why are they important? Tell us in the comments!