What is Phenylketonuria (PKU)?
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What is Phenylketonuria (PKU)?

PKU is a rare, inherited and metabolic condition that affects around 1 in 10,000 people around the world.

It is inherited because you inherit one PKU gene from your mum and one from your dad.

The body cannot break down or metabolise phenylalanine (Phe) found in protein.

A low protein diet for life, PKU protein formulas, blood-the monitoring and regular dietitian check ups are essential.

All babies are screened for PKU shortly after birth using a heel prick test.

Cambrooke’s founders, Lynn and David Paolella made it their mission to develop a variety of nutritious and great tasting protein substitute (formulas) for their children, Cameron and Brooke, and to help all other children and adults with PKU around the world. Their mission started 20 years ago and is stronger than ever today.

Email us directly at ukinfo@cambrooke.com.

See you soon, and welcome to the family!

This video was created by:

Tom Chimiak, Filmmaker and Lecturer. Tom has Classic PKU.
Natasha MacManard, Animator

Thank you, Tom and Natasha!

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Mindfulness, with Lillian Mirsafavi

Meet Lillian!

I’m Lillian, a yoga, meditation and mindfulness teacher. I attended my first yoga class in my early 20s and fell in love with the practice. Yoga is not just about making shapes with our bodies, it’s about linking movement to breath, being in the present moment and taking time at the end of each class to deeply relax the body and mind. I became hooked on how I felt after each class and started to practice regularly, in studios and also at home via YouTube.

I studied law at university and trained as a corporate lawyer, during this time my yoga classes became my favourite part of each day and helped me to deal with the stresses of a corporate career. These days I’m a full-time yoga and meditation teacher. I teach adults, kids and teens how to use yoga to feel calmer, more centred and to take the techniques learned in a yoga class off of the yoga mat and into daily life.

Introduction to ‘Mindfulness’

Mindfulness is a bit of a “buzzword” these days. It can seem like a big topic to approach, maybe it seems like another thing to add to your already busy life or something that you don’t have time for? Mindfulness is actually really simple. It just means being fully present in each moment, and even five minutes a day will make a huge difference to your physical, mental and emotional well-being.

It’s especially important to practice mindfulness when managing your own health or caring for others. The busier life is, the more important it is to take small moments through the day to pause. We speed up by slowing down and by taking moments throughout the day to take stock and check in with how we are feeling. Mindfulness helps us to feel fully present in the moment, rather than thinking about the past or worrying about the future and today’s to-do list.

Morning Mindfulness – 5 minutes

Morning journaling.
This can be done before getting out of bed, or once you have made a cup of tea. Take a nice notebook, turn to a blank page, grab a pen and write! Journaling is an amazing way to start the morning and taking just five minutes before checking your phone or before family members are up really sets the day off in a positive way. You can “free write” whatever comes to mind, writing out thoughts and worries so that these are left on the page before you start your day.

Another quick and easy way to journal is by writing three things you are grateful for. Practicing gratitude can sometimes feel difficult when life is stressful but reminding yourself of the positives (food in the fridge, a warm home, happy memories with loved ones) can help to keep things in perspective and set you up for a great day.

The journal is just for you, you don’t have to show it to anyone so write away!

Lunchtime Mindfulness – 5 minutes

Five senses check-in.
This can be done while sitting at your desk, sitting in a quiet space or while walking.

Start with sight, notice five things you can see, focus on each one by one. Then notice five sounds, even if you think there is “silence” pick out five different sounds from it. Listen out for a barking dog, a dripping tap. Then notice any smells. What are they? What associations do they bring? Notice the taste on your tongue. Lastly, feel your clothes against your skin, feel the surface you are sitting, standing or walking on. Tune into each sense one by one and really connect with the information you are receiving.

This practice is a really nice way of getting back into our bodies and reconnecting with our senses, especially when we feel overwhelmed and not fully present in the middle of a busy day.

Evening Mindfulness – 5 minutes

Belly Breathing
Belly breathing is an amazing way to destress the body and prepare for a good night’s sleep. Throughout the day we tend to breath only into our upper chests and our breath can become shallow and constricted during times of stress.

Lie on your back (this can be done in bed or lying on a yoga mat or soft surface), placing your right hand on your belly and your left hand on your heart. Breathe deeply in through your nose, feeling your belly rising up to the ceiling. Pause for a moment and then slowly breath out through the mouth, feeling the belly softly falling. Try to breathe in for a count of four, and out for a count of four.

Practice belly breathing for two minutes, increasing to five minutes as your body becomes more comfortable breathing in this way.

Top tips!

Five minutes is enough to feel the benefits. Five minutes of deep breathing, quiet meditation or gentle stretching will make a huge difference to your day.

Mindfulness can be done during your usual daily activities. Preparing food, eating, walking and even cleaning the house can all be done mindfully when you fully focus on the activity in hand.

Team up with a friend and keep one another accountable. Try doing an online yoga class together or going on a mindful walk (leaving your phones at home or on silent) and really tuning in to everything around you.

There are some great apps which feature breathing techniques and guided meditations that can be done anywhere, even on public transport!

Mindfulness can be practiced by the whole family, children as young as four can be taught mindfulness and breathing techniques.

I hope these tips and techniques will enhance your mindfulness each day.

Best wishes,
Lillian Mirsafavi

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The Back to School Competition!

Please note: This competition is now closed.

T&Cs: Competition closes at midnight BST on 31 August 2020. 3 winners will be chosen at random and announced on 1 September 2020. Winners must contact Cambrooke within 14 days to claim their prize. Prizes are not exchangeable or transferable. ALL competition entrants will receive our 5 Day School Dinner Planner and Hand Sanitiser. Entrants must reside in the United Kingdom or Ireland.

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Leaving Primary in 2020 – Fun or Stressful?

Leaving Primary in 2020 – Fun or Stressful?

By Vicki Watson BEd

The Year 6 ‘Rite of Passage’ is a key part of any Primary School child’s career. It means the end of 7 years hard work culminating in SATs, often a Residential Trip and the ‘End of Year Show’. Not to mention the Leavers’ Party! The last term where you’re with the friends you’ve maybe had from Nursery and where you can often push boundaries, safe in the knowledge the teachers know you and know how to handle you.

2020 changed all that.

At first it was a novelty – no SATs – Yay!

Extra holiday and Joe Wicks – YAY.

No seeing your friends – not so yay.

OK – let’s discover Zoom, House Party, Facetime, Tic Toc, Snapchat, more Fortnite, etc – back to Yay!

Teachers send out work to do at home but parents don’t always understand it and there feels like there’s no one around you to ask. Lessons online were fun at first but then became arduous.

“You’re living through history!” came the cry. “So what?” was the answer – we’ve got no show, no party, no hangouts.

Then the Government said Y6 could go back to school! But only in small bubbles and only part time. Not everyone was brave enough to do this. Classroom doors were left wide open, sanitizer was everywhere, you couldn’t mix with your friends in other bubbles, the work might have been there but the concentration levels weren’t.

And then the High School visits…… normally done by the transition Y7 teacher coming into school. Some schools still did this with outdoor meetings, others ‘met’ their children by Zoom, others just sent a letter saying which form to report to in September. All very stressful.

The Summer Holidays – once looked forward to – become an extension of restrictions. Holidays abroad cancelled and, in our case, return to a form of lockdown on 31st July. Chats in the garden with your mates about what you think High School will be like are delayed once more.

Secondary Schools are concerned about how much their new Year 7s will have missed. The answer is anything from a little to a lot depending on the home circumstances during lockdown. Socialising, academic catch up and behaviour issues will be the main focus of the next year – maybe two – depending on how this pandemic progresses. PSHE will be the subject that links all others together as confidence, social skills, and knowledge are reintroduced in a new academic year.

As a parent, the next few weeks have lots of potential for helping your child prepare. Anecdotes – true or false – of how you got lost on your first day/week at Secondary because the school was so big. Make sure your child’s times-tables are secure – most schools use TTRS but you can get it as a parent too. Build up their resilience to getting things wrong – we learn by mistakes. Explain that no-one gets everything right whether emotionally, academically or in decision making – not even Boris Johnson! Remind your child that the teachers went through lockdown too – so they WILL understand. A lot of Year 7 will be revision or catch up from Year 6 and everyone is in the same boat. Play to their strengths – kindness, sporting ability, organisational skills, artistic skills, new skills learnt recently and most of all, flexibility. It’s ok to cry – but it’s equally ok to laugh too!

Who wants to be 11 years old and ‘Live through History’? Not the class of 2020 that’s for sure!

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Fulfilling my travel dreams (with PKU)

Fulfilling my travel dreams (with PKU)

By Chloe Easton

Hi I’m Chloe, I have PKU and I love to travel!

Despite travelling overseas being pretty much off the cards at the moment, I have still found myself dreaming about a time when this will be possible again.

I have been thinking back to some of my past trips…

Northern France and Belgium – 2012

I have always dreamed of seeing the world from a young age, so when the opportunity to visit Northern France and Belgium with school arose, I knew I had to go. I was aware that my PKU wouldn’t make things straightforward, but this didn’t change my mind.

I was just 14 years old at the time of this trip and it was the first time dealing with my diet alone – a scary but exciting prospect. My Mum and I had a meeting with one of the teachers who would be accompanying me so that she understood the basics of my condition, but we agreed that ultimately it was down to me to take charge. We also spoke with my dietitian and decided the best option would be for me to take my supplements, low- protein bread, milk and plenty of snacks that I could use up my protein allowance on at the end of the day if needed. At meal times, I would need to make accurate estimations of how much protein I was eating (the trip was only 5 days long). This really wasn’t as difficult as it sounds; I have always been very involved with my diet and so I had good knowledge of which foods were low and high in protein and their various weights. I made sure to stick to vegetarian options and the foods I felt most confident about.

As soon as I returned, I did my bloods and to my relief my results came back with very little change. This gave me the confidence I needed in tackling my PKU independently – from this moment, I knew that I could do it.

Cornwall – 2019

Then, last summer I took a solo trip to Cornwall for an entire month. This was something I had hoped to do for many years and I’m so happy that I ticked it off my list!

At this point I had completed 3 years away from home at university, so I felt more than ready to handle my diet. (I had also discovered a few years prior to this that I had mild PKU, which made my diet much easier to manage). The biggest difficulty I still faced though was how to transport a month’s worth of supplement with me. I travelled to Cornwall via the train, on a long 7 hour journey with a traveller’s backpack. There was no way of fitting 2 boxes of supplement in that bag!

However, I managed to avoid a lot of stress with some careful pre-planning. I arranged to have my supplements delivered straight to my holiday apartment so that they were already there waiting on my arrival. I was so worried that there would be some sort of mistake, but my anxieties turned out to be for nothing as it all worked out perfectly and I had an amazing trip – thank you to Cambrooke for making that possible!

Paris – 2020

My most recent trip, to Paris, was in February this year. This was another memorable occasion for me because it was my first time travelling overseas without my parents or a school teacher, and instead my 2 friends from university. We went to Paris on the Eurostar; I was most anxious to know if I would get questioned at customs about my supplements or not. I was on my own, with no parents to support me. So I took a letter from my dietitian explaining why I needed my Bettermilk powder, but even though I was covered, this didn’t stop me feeling nervous (we had difficulty with this years before when flying to Florida). However, to my relief I had no trouble at all. Still, I was glad that I had prepared for the worst.

I definitely have many more travel destinations in mind for the future – My best friend and I are hoping to go to Italy next year (if life is back to normal)! I am excited to see as much of the world as I can. Although having PKU doesn’t make things straightforward, there are always ways around problems – I certainly won’t be letting it stop me.

Read more at Chloe’s PKU blog: The PKU Life.

A huge thank you to Chloe for writing this brilliant blog post for us! If you would like to write for us, email ukinfo@cambrooke.com.

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PKU Cheese

One food that has become increasingly accessible for PKUers in the past few years is PKU Cheese! Cheddars for pasta, spreads for sandwiches and desserts, mozzarella for pizzas, feta for salads – we are spoilt for choice! And the best bit? Not just PKUers are loving and driving this sector forward. Society as a whole is pushing for less meat and dairy and more sustainable and ethical ‘plant-based’ foods.

1. Violife Original Block

This is one of our favourites because you can chop it up into squares as a snack, grate it on top of pasta or slice it up for a sandwich.

Cheesy Butternut Squash & Mushroom Bake:

Lasagne:

Burrito Bowl:

2. Violife Original Flavour Slices

The slices are great for sandwiches, slicing on top of bakes and more!

Cauliflower Rice Stuffed Red Peppers:

Healthy Canapes:

3. Violife Greek White Block

This cheese is brilliant in salads, as part of a buffet or tapas spread. It actually tastes better than the real thing!

Cucumber, Feta and Pomegranate Bites:

Olive Tapenade:

4. Violife Prosociano Wedge

A brilliant PKU Parmesan Cheese alternative. Great with pasta!

Cannelloni:

5. Violife Creamy Spread

Just like cheese spread! Use in desserts, mix into pasta for a creamy sauce or simply spread it on a cracker!

Cheesecake Strawberries:

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The Vegan Kind Giveaway for World Meat Free Week

Please note: This giveaway is now closed.

All competition entries will receive our Covid-19 Pack, containing our Low Protein in 15 meal planner, hand sanitiser and face mask. We are also giving away 2 x £50 The Vegan Kind gift vouchers to a couple of lucky participants.

Two winners will be chosen at random on Monday 22nd June and will receive a £50 voucher to spend at thevegankindsupermarket.com. The prize cannot be exchanged or substituted. Winners must reside in the UK. All other entries to the competition will win a Covid-19 pack complete with hand sanitiser, face mask and our Low Protein in 15 recipe book.

Your contact details will only be retained in order to choose our competition winner and to carry out the competition delivery. Post-competition, all contact details will be securely deleted in accordance with the GDPR. Competition entrants that have confirmed they would like to be contacted by Cambrooke and/or would like to be added to our mailing list, will be retained only for that purpose.

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