Importance of Support Groups for Teenagers with PKU

Hi, my name is Kian and I’m a 17-year-old from West Yorkshire with PKU. I have met lots of other people with PKU over my 17 years in various ways; at conferences, parties, outdoor bound style weekends away or from going to consultations at the hospital when I was younger, and I have found their support invaluable.

Family Days for Families with PKU

For the past 8 years or so, every autumn, I have gone away for the weekend to an activity centre with other children/young people and dietitians from all over the UK. We go to Derwentwater in the  Lake District, which is located close to Keswick. There is an outdoor centre there that we rent out from Friday until Sunday and we do lots of different activities in our groups such as hill walking, canoeing, abseiling and gorge walking. We stay in dorms of around 4-6 people depending on how big the room is. This allows you to meet other people with PKU and share your experiences at the same time as having lots of fun and trying new PKU foods that are brought there by all the specialist food companies. This is one of my favourite things to do as I now have friends from all over the UK that I stay in contact with all year round and that I get to see every autumn at Derwent.

My mum is the person who organisess the PKU parties for West Yorkshire. This means that a couple of times each year she rents out a venue to hold a party for people with PKU and their families to come together and meet other people with PKU. We usually do an activity like having a swimming party and we get to try the new foods and supplements that the company reps bring along and put out on their tables. This is good because it means that I get to meet new people each time and get to see my friends that I have met over the years or that I have known for a long time.

Meeting Friends at the NSPKU Conference

Every year, the NSPKU hold a conference where you can go for the weekend and listen to talks from specialists and other people with PKU, about their experiences and how they have coped over the years. There are also lots of different companies that come to these conferences to exhibit their new foods or supplements and have samples for you to try whilst you are there. There are a wide range of activities for all ages during the day if you don’t want to sit in on all the talks and would rather go and meet new people. I feel like the people I meet at these conferences, and other specialist pku events, will be my friends for a very long time because we are all quite similar, which means we can go and talk to each other about anything. I find it difficult to talk to my friends, who don’t have PKU, about difficulties that I am having (such as not liking my supplements or being frustrated that I don’t have much of a choice in restaurants) but find it easy to talk to my PKU friends and it’s great as we swap different ideas of what meals to eat in a day that fit in with your exchanges plus what new foods we’ve found that are ‘free’.

I feel like its good to know other people with PKU because you can talk to them about things other people wouldn’t understand. For example; you can talk about the supplements you are on and about how many exchanges you are on and so on. It is also easier when you’re eating out with them as you don’t have to explain to them why you can’t eat certain foods. I feel like eating out is something that it a bit more difficult with other people who don’t have PKU, if you haven’t known them for a long time as it isn’t something that is commonly come across, so it is difficult to explain to people. When it comes to explaining it, I just give a brief overview of what PKU is so that they have a simple understanding of it and know why I am eating different foods. Even though there haven’t been any events this year due to Covid, I have been able to stay in contact with my friends, as we have a group chat, so I haven’t felt too isolated.