We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.
Happy New Year from all at Nutricia HQ.
Have you made any resolutions, plans or commitments for 2019? If you’re aspiring to cook more, our recipe of the month is just for you! A delicious warming soup that can be made more substantial by adding some low protein pasta. This is just a selection of the recipes that you can find on www.lowproteinconnect.com. Don’t forget to share your low protein creations with us on social media!
We wish you the very best for 2019.
Best regards,
Amy at Nutricia Metabolics
Recipes of the Month:
Roasted Red Pepper and Tomato Soup:
Please click on the image to see the recipe.
You can keep up-to-date with Nutricia Metabolics on social media too!
Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.
Our 2018 Patient Day took place at Manchester Science Museum. Around 60 families and patients with Inherited Metabolic Disorders gathered to meet each other; hear about our new support services; and explore the incredible Manchester Science Museum! After picking up their name badges, goodie bags and fuelling up on tea and coffee, our Patient Day was off to a start!
All Patient Day Ready!
Joanne, Team Metabolic’s Acting Chief Executive, opened the day and introduced Team Metabolic to everyone! Our team has grown from 5 members of staff to 11 over the past 12 months! So, there were lots of new faces to introduce!
The morning’s talks started rather emotionally with the lovely Tanya Brindle, who shared her daughter’s, Paige, story. Paige is bravely living with Congenital Adrenal Hyperplasia Salt-Wasting Disease (CAH). Diagnosed as a baby, Tanya explained the struggles of raising a child with a rare condition and how the support given by Metabolic Support UK had been invaluable to her along her journey. Being incredibly appreciative of the support given by Metabolic Support UK and similar organisations, she felt the need to give back to those organisations, explaining her drive to fundraise and raise awareness.
Tanya shares her story
Following this inspiring talk, a focus group was held. This was to gather your opinions on accessing medicines and support from your GPs and District Hospitals. From the discussions, it was clear there was a gross inequality amongst patients and families across the country and how easily they could access treatments and care. Feedback from this session is invaluable to the Metabolic Support UK team and will inform our future strategies, in terms of where to provide support and what support is needed.
Our Patient Day Focus Group
After a busy morning, lunch was much needed, with low-protein options also on the menu! Patients and families had the opportunity to mingle with each other and the Metabolic Support UK team were always on hand to answer any questions. Representatives from Nutricia, a leading low-protein nutrition company, and Over The Wall, an activity and holiday provider for children and families with additional needs, were there to offer support to patients and families from a nutrition and leisure point of view.
Over the Wall share advice on trips away!Nutricia attend our Patient Day!
The afternoon consisted of workshops, including a peer support workshop led by Team Metabolic’s Jess and Rachel, who gave some tips on how to become a peer supporter. This workshop was then followed by a presentation led by the amazing Ali Hardy, Mum to a daughter with Hyperornithinemia-Hyperammonemia-Homocitrullinuria (HHH) and former headteacher, who shared her own story and provided advice on applying for school places, for children with additional needs.
Thanks also goes to Vicki from the Citizen’s Advice Bureau (CAB), who gave a very informative talk on benefits, including tips and tricks on how to ensure your application isn’t declined. This was then followed by Rashda, who very emotively and kindly shared her story.
During the afternoon, kids got to meet our new Metabolic Monster friends by joining us for our story hour and having the opportunity to draw their own Metabolic Monsters! If you want to hear more about this project, please contact Jess on jess@metabolicsupportuk.org
Our Metabolic Monsters!
The day was an amazing opportunity for patients and families to meet each other and for Team Metabolic to share advice on the support services available to patients and families. We hope everyone who attended the day enjoyed it as much as we did, and that you all had a fab time at the museum! We can’t wait to see you all again!
If you have any photos of the Patient Day, we would love to see them! Please can you forward your photos to Maggie on margaret@metabolicsupportuk.org
From Monday 15th – Sunday 21st October 2018 it is National Baking week! National Baking Week is a great week to celebrate the cherry bakewell, the chocolate brownie and the unforgettable gooey chocolate chip cookie! However, if you have an Inherited Metabolic Disorder, you may not be able to indulge in all these bakes, as they come from the supermarkets’ shelves. That’s why we’ve created a list of providers, who offer some suggestions on baking recipes suitable for patients with certain Inherited Metabolic Disorders!
Adapting to a new diet or avoiding certain foods, due to your condition, can be tricky. With Inherited Metabolic Disorders, the foods you must avoid can differ hugely, depending on your condition and the severity of it.
As your patient organisation, we want to help you in every stage of your journey with an Inherited Metabolic Disorder, including adapting to your new dietary requirements. Here, we’ve collated a list of places you can find recipe ideas to suit your diet.
Low Protein Connect
Low Protein Connect are a medical nutrition company, who offer advice on medical nutrition; sell products to help with special dietary cooking; and organise family days out. Their website also has recipe suggestions for those on a low protein diet. You can check out their recipes and find out about the events they offer on the following links:
Mevalia is a company, who produce low protein goods, as well as suggesting new ideas for low-protein recipes. We’ve heard their pizza bases are particularly good! To discover more about Mevalia and for recipe ideas, check out their website:
VitaFlo is a supplier of low-protein supplements and who also offer advice on recipes. Organising meet-ups for patients and families is also one of the services they provide. To keep up-to-date with VitaFriendsPKU events and recipes, check out the following links:
VitaFriendsMSUD is a supplier of low protein products suitable for MSUD patients. They also have advice on recipes for MSUD patients and organise meet-ups for their patients and families. To see what VitaFriends MSUD offer, please visit their website:
This US based blogger focusses on recipes for PKU patients. A PKU patient herself, her blog offers a variety of exciting and delicious low protein recipes, as well as advice on travelling with PKU and other topics. Check out her blog on the following links:
Inherited Metabolic Disorder Dieticians Louise and Sarah set up a blog to share recipes, advice and insights into their own lives as dieticians. To get an insight in the life of a dietician and for further advice on your diet, please see the following links:
We hope these websites and links might provide you with some bake-spiration this weekend! Happy baking!
If you have suggestions of other recipes sites, which have recipes suitable for patients with Inherited Metabolic Disorders, please contact Maggie on margaret@metabolicsupportuk.org
We are delighted to share another guest post from our friends at Nutricia Metabolics: the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.
The leaves are changing colour, the days are getting cooler and we’re swapping summer salads for winter soups, stews and casseroles.
Our recipes for the month of September are inspired by back-to-school and autumn. These are just a selection of the new recipes that you can find on www.lowproteinconnect.com. The low protein tomato pasta bake is perfect for batch cooking and serving during the busy week.
Don’t forget to share your low protein creations with us on social media!
Is there a topic that you would like to read about? Or maybe you have an idea for our Recipe of the Month? Contact us on social media. We hope you enjoy reading our blog and trying our recipes.
Kids are now back to school and soon enough university students will go back to their studying as well! For many young people, the step between university and high school can be huge. But for university students with an Inherited Metabolic Disorder, it can be an even bigger step with there being even more things to take into consideration.
Here, our guest blogger, Chloe Easton, gives her top tips on things you should consider before heading to university if you have an Inherited Metabolic Disorder.
Hi, I’m Chloe and I have an Inherited Metabolic Disorder – Phenylketonuria (PKU for short) – which basically means my body can’t break down large amounts of protein. So, I have to keep track of my daily protein intake. As I’ve just recently finished my undergrad degree, I thought I would put together a list of top tips for starting university with an Inherited Metabolic Disorder. If you are starting university soon, I’m hoping this will be of some use to you!
1.Get baking!
Living with PKU means that sometimes I have to eat special low-protein foods and my meals often have to
Bread-making
be homemade. A large part of my diet involves making low-protein bread. So, before I started uni, I had several trial runs of baking this, as it was something I had always relied on my Mum for. If you, like me, need special foods for your metabolic disorder, I would definitely recommend spending a bit of time practising baking or meal preparation. As when you finally come to do this yourself at uni, it might not feel as daunting.
2. Contact your new doctor
This is something I didn’t actually do myself, but in hindsight it would have been beneficial! I think it is always a good idea to get in touch with your new health centre or doctor, prior to starting uni, just to let them know what’s what. Tell them about your metabolic condition and what will be required from them. In my case, my new doctor had never even heard of PKU until meeting me, and arranging prescriptions was sometimes frustrating because the system was slightly different to what I was used to back home. However, if I had tried to work this out before moving to uni, the transition probably would have been a lot smoother.
3. Invest in a mini fridge
If you have certain foods which need refrigerating, you can request permission to have a mini fridge in your
Mini Fridge
room. This is something I did throughout all three years of university, just because I didn’t feel completely comfortably storing my protein supplements, etc, in the communal fridge. Most, if not all university halls will have no problem with this, because, after all, it is for a medical purpose. My university halls certainly didn’t mind – but it’s always best to check. This also means people won’t eat your food!
4. Pack plenty of supplies
Upon moving to university, it is important to make sure you are stocked up on the essentials of what your condition requires. For me, it was making sure I had enough of my low-protein foods to get me through the first few weeks, just in case there was any trouble sorting out prescriptions. I didn’t want to risk running out. If you have PKU like me, I would say the Mevalia pizza bases are a good item to pack. If you and your flatmates decide to have a takeaway night, then you don’t have to miss out!
5. Chat to new flatmates before moving in
If you are a bit nervous about meeting your new flatmates and having to explain your metabolic condition to them, then I would recommend trying to get in touch with them before moving in. I managed to find my new flatmates on a university Facebook page and then we started up a group chat together. This was great because I was able to get to know who I would be living with, but I also decided to tell them about my PKU in this chat and mentioned that I would be bringing a bread-maker machine too. Getting all of this off my chest before arriving calmed my nerves slightly, and also meant I wasn’t as worried about turning up on the first day with a bunch of “strange” food.
6. Get involved with societies
Although you might feel slightly different because you have a metabolic condition, this doesn’t mean you have to have a different university experience compared to the typical student. Make sure you get involved with societies and the various things your uni has to offer. I was a part of the English society at Lincoln for 2 years and during this time I took part in many socials (from bar crawls to student nights at a kid’s play zone). In my final year, I was a writer for the university’s online student newspaper – The Tab Lincoln. Don’t exclude yourself, just because of your condition!
7. Mingle with other students
Following on from my previous point – another great reason to get involved with societies is because this will help you to mingle with other students and hopefully build up friendships. In my experience, having a friend at uni is even more important than in any other situation because when things sometimes become overwhelming to deal with, (whether that be in relation to your metabolic condition or not), they can be there to support you when your parents can’t.
8. Student Wellbeing are here to help
Another great support system that will always be there for you is Student Wellbeing – designed to help students with any problem at all, be it financial or emotional, they are there for you. Moving away to a new place, amongst new people can be daunting in itself, but when you have a metabolic condition to deal with as well, it can be even more of a challenge. So, don’t be afraid to ask for support if you need it.
9. Don’t be afraid to just be yourself
I have always been a shy person and very self-conscious about my condition around other people. Before starting uni, I remember feeling anxious about how people (my flatmates in particular) would receive my PKU. But honestly, this was an unnecessary worry because they were so understanding and just let me get on with what I needed to do. In fact, they once told me they loved it when I baked my low-protein bread because it made the flat smell so nice! I learnt that, generally speaking, people aren’t going to have an issue with your condition – so don’t worry.
10. Have confidence!
Above all in my opinion, the most important thing is to have confidence that you can do it! When I first started university, it was one of the first times I had dealt with my PKU independently, and so it was quite overwhelming. But, like most things, with time it became easier. Now three years later, it feels like nothing has even changed.
Thank you so much Chloe for sharing your tips on things to consider before heading to university – some really great advice for students heading to uni for the first time, and for those heading back to university for yet another year of their degree!
We are delighted to share another guest post from our friends at Nutricia Metabolics; the leading provider of medical nutrition products and source of dietary information for patients following a low protein diet. Through their regular guest blog, they share the latest news and developments in the area of Inherited Metabolic Disorders, along with tasty recipes. This post is intended for those following a low protein diet.
How amazing has the weather been recently? Finally, a summer we can really talk about.
June has been a busy month in Nutricia HQ with lots of new and exciting resources appearing on our website www.lowproteinconnect.com. You can now find tips for cooking the perfect rice and pasta, a range of new recipes (2 of which we’ve shared below) and our holiday support guide.
Our recipes of the month for June are inspired by the sun and are perfect for packing up and taking with you for a picnic. And don’t forget to share your low protein picnic ideas with us on social media!
Best regards,
Amy at Nutricia Metabolics
Recipe of the Month – Banana Bread
Credit: LowProteinConnect.com.
Click the image to see the recipe!
Recipe of the Month – Lavender & Lemon Shortbread
Credit: LowProteinConnect.com.
Click the image to see the recipe!
You can keep up-to-date with Nutricia Metabolics on social media too!
Is there a topic you that would like to read about? Or maybe you have an idea for our Recipe of the Month? Reach out to us on social media. We hope you enjoy reading our blog and trying our recipes.
We are delighted to share another guest blog from our friends at Nutricia Metabolics!
With Easter just around the corner, we have been trying out some new springtime recipes – see our recipe of the month for the perfect addition to your Easter menu! Also this month, we are very pleased to announce the launch of the new ‘LowPro App’– the useful tool to help you manage your low protein diet, available to download now! You can read more about the features of the app below. Looking for an event near you to meet others on a low protein diet? The Nutricia team has been busy preparing some exciting days out, including a trip to Thorpe Park on the 13th May. For more information and to register your place for this event click here
Happy Easter and best wishes from the team at Nutricia Metabolics xxx
Low Pro App – available to download now
The Low Pro app is free to download for iOS and Android devices and can be used for the following conditions: PKU, MSUD, TYR, HCU, GA1, IVA, MMA/PA and UCD.
Once downloaded, get started by completing your profile. A summary of your activity will be shown on the dashboard.
The app can be used to:
* Monitor how many exchanges you’ve had throughout the day.
* Keep track of your protein substitutes.
* Set reminders to take your protein substitutes and to attend hospital appointments.
* Exchange calculator – convert protein (g) into exchanges.
* Keep track of your blood levels and export and share graphs as a PDF.
* Link with Apple Health and Google Fit to track your steps.
* If you are a parent with more than 1 child on a low protein diet, there is an option to have multiple accounts.
2. Cut the butternut squash in half. Scrape out the flesh and remove the seeds. Using a knife create a channel in the butternut squash halves so that you can fill them with the rice filling.
3. Drizzle with the olive oil, sprinkle with fresh thyme and season with salt and pepper.
4. Roast the butternut squash halves in the oven for 40 minutes or until soft.
5. Now prepare the filling: Heat the olive oil in a pan, sauté the garlic and onion until soft.
6. Add the mushrooms*, sundried tomatoes, olives and cooked Loprofin Rice to the onions mix and fry for a further 5 minutes.
7. Season with fresh thyme, salt and pepper.
8. Remove the butternut squash halves from the oven, allow to cool for a few minutes.
9. Fill the butternut squash halves with the rice filling.
10. Sprinkle with the low protein cheese* and fresh thyme.
11. Drizzle with some olive oil and bake in the oven for an additional 10 minutes until the cheese melts and the butternut squash is tender.
12. Slice the butter nut squash length ways to serve.
Serving Suggestion:
This dish goes really well with steamed green vegetables or a fresh green salad. Sprinkle with some pomegranate seeds to add a pop of colour.
* This vegetable, if taken in large amounts, adds a significant amount of protein to the diet and needs to be counted as part of your exchanges
** Check the protein content on the food label
Nutricia are the leading provider of medical nutrition products and a great source of dietary information and advice for families following a low protein diet. Through their monthly guest blog, they will be sharing their latest news and developments, along with a tasty recipe of the month!
We are delighted to share the first of our monthly guest blogs from our friends at Nutricia Metabolics!
Nutricia are the leading provider of medical nutrition products and a great source of dietary information and advice for families following a low protein diet. Through their monthly guest blog, they will be sharing their latest news and developments, along with a tasty recipe of the month!
It’s been an exciting start to the year at Nutricia Metabolics! We’ve been busy in the kitchen cooking some brand new low protein recipes, including the delicious meringues featured below. The team have been working hard preparing for this year’s Superhero-themed Low Protein Living Weekend in Kilkenny – it was wonderful to see so many families come along and a great time was had by all! There will be plenty more events in the UK and Ireland throughout the year so watch this space! We’re also very pleased to announce the launch of our brand new Anamix 6 website this month, designed for children aged 1-10 on a low protein diet – check out the new and exciting features below!
Meet the gang – spin the wheel to read fun facts about each member of the Anamix 6 Club.
The Bookshelf – here you can find all the Anamix 6 stories in one place. You can even read the books along with the gang!
The Video Zone – Watch the Anamix 6 stories come to life as animations.
Competition time – Enter exciting competitions for a chance to appear in the Anamix 6 ‘Hall of fame’.
Games – Play exclusive Anamix 6 games & puzzles – Find you way around the Mega Maze and enter the Anamix 6 race!
We love to hear from you – send us your photos, drawings and letters.
What is the Amamix 6 club?
The Anamix 6 Club is for children on a low protein diet, aged 1-10 years in UK & Ireland. The aim of the club is to teach children about their condition in a fun and friendly way. Each month members will have something to look forward to in their letter box and will receive a special surprise on their birthday!
ust around the corner, we have been trying out some new springtime recipes – see our recipe of the month for the perfect addition to your Easter menu! Also this month, we are very pleased to announce the launch of the new ‘LowPro App’– the useful tool to help you manage your low protein diet, available to download now! You can read more about the features of the app below. Looking for an event near you to meet others on a low protein diet? The Nutricia team has been busy preparing some exciting days out, including a trip to Thorpe Park on the 13th May. For more information and to register your place for this event click 
The Anamix 6 Club is for children on a low protein diet, aged 1-10 years in UK & Ireland. The aim of the club is to teach children about their condition in a fun and friendly way. Each month members will have something to look forward to in their letter box and will receive a special surprise on their birthday!