As another Christmas approaches us, our guest blogger, Chloe, reflects on her experiences of the holiday as a young child with PKU.
“Growing up with an Inherited Metabolic Disorder can be challenging at times – you can’t always enjoy even the simplest of things in the same way as everyone else. When I think back to what it was like for me growing up with Phenylketonuria (PKU), holidays such as Easter and Christmas stand out in my mind as being some of the most challenging times. They sometimes felt complicated and filled with worry. Although my condition is now much more manageable in my adulthood, this hasn’t always been the case. I have certainly experienced many Christmases feeling awkward at parties and missing out on exciting festive foods. Still, my family have always made an effort to make me feel included in the Christmas celebrations in some way or another.
My earliest childhood memories of Christmas include a cross-stitched advent calendar, which my auntie made for me. As an alternative to the usual chocolate advent calendar, my parents used to fill mine with protein-free sweets. I found, as most young children do (and even as an adult now), having an advent calendar with which to count down to the special day was one of the best parts of Christmas – I’m so glad I’ve always been able to take part in this tradition.
My parents had to take extra care when planning my meals around this time, particularly if we were going to a family or friend’s party, so that I had enough of my protein allowance left over for a Christmas treat, or so I could indulge a bit more in the buffet food. Although, this didn’t always go to plan. The tradition was that I spent Boxing Day with my dad. Then later that evening, I would go with my mum to my aunt and uncle’s house. My mum would always tell me to save some of my protein allowance for the evening, but there were a few times when I returned with less than we had planned. Unfortunately, on those occasions, I had to miss out. However, my parents were very considerate and never ate anything which I couldn’t have in front of me – I didn’t realise this until recently when I was reminiscing about past Christmases with them – I’m so grateful that they did this but I also feel a little guilty because it meant they had to miss out too!
Despite me missing out on some of the exciting food, I always had my own low-protein food on which to rely. But, as I got older, I began to feel more embarrassed and awkward about taking this with me. I began to notice that it didn’t quite look the same as everyone else’s. I felt so self-conscious and anxious, especially if I was around people that I’d not met before because I knew questions were bound to be asked.
When it came to my Christmas dinner, I always enjoyed filling up on a variety of vegetables, or sometimes my mum would bake me a delicious vegetable pie (this is what I still do now). Christmas dinner can be whatever you make it. You don’t always have to stick to traditions. As long as you are happy and having fun, that’s all that matters.
I’ve come to realise that whether you have PKU like me or another similar metabolic condition, you shouldn’t let it stress you out too much and you certainly shouldn’t let it stop you from having a wonderful Christmas!”
Thank you to Chloe for sharing your experiences of Christmas with us. We hope you and your family have a magical Christmas this year!
If you would like to share your story or experiences of living with an Inherited Metabolic Disorder, please contact Maggie on firstname.lastname@example.org or 0845 241 2173. We look forward to hearing from you!
This year’s conference was extra special, as it was also the date of our first NextGen Conference! We were delighted to welcome young people aged 12-25 to come and join our Young Person’s Project Officer, Sally, and a variety of other speakers, to speak about their condition and ways they could manage growing up with an Inherited Metabolic Disorder. On the day, one of our guest bloggers, Chloe, was on hand to cover the whole day on social media (see NextGen‘s Instagram page: @metabolic_nextgen for all the coverage!) and wrote this blog on how the day went!
“A few months ago, Metabolic Support UK invited me to work with them on their new emerging project, “NextGen” (more about this later); manage their Instagram account for the day; and, of course, create a blog post for them afterwards! Some of you may remember that I’ve done some blogging for Metabolic Support UK in the past (my most recent post was about my trip to Cornwall – https://www.metabolicsupportuk.org/guest-blog-chloes-cornwall-adventure-preparing-for-an-adventure-with-an-imd-part-3/), but it was still such an honour to be asked to work with them. I had heard of their conference and was already considering attending, since I missed out on the NSPKU’s conference earlier this year. So this worked out well!
I travelled to Birmingham for the conference, both excited and extremely nervous. Those closest to me will know how this event was such a massive step out of my comfort zone, but something I was absolutely determined not to miss out on. I found travelling to Birmingham was the easiest part for me (I think my solo trip to Cornwall had helped prepare me for this aspect). The conference itself was what I was most anxious about. I was worried about meeting a bunch of new people and interacting with them in the activities. However, I surprised myself and found that once the initial ice-breaking was over, I got into the swing of things and really enjoyed myself!
NextGen is a community where young people aged 12- 25 living with Inherited Metabolic Disorders can come together to make friends and share their experiences with one another. If you’re aged 19-25, you can register as a Delegate, which means you also get to engage with this community; help towards research; and become an advocate for the patients, having already grown up with an IMD yourself (I am also a Delegate). I think that NextGen is essential to the IMD community. Simply having the opportunity to meet others with your condition, or one similar, and have conversations about your experiences of school or mental health is so important. I still vividly remember my first NSPKU conference when I was eight years old and how it honestly changed my life. Because for the first time, I met other children like myself. These conditions are so rare. So it means people living with them rarely cross paths, but NextGen enables this to happen. Having met the young people, who are already a part of this wonderful community, has only made me realise more that it needs to continue to grow. If you are interested in joining NextGen, or perhaps have a child, who you think would love to join, please sign up. I have left Sally’s email address at the end of this post!
I had a great time working with NextGen at the conference; it’s rewarding to think that I’ve hopefully helped some of the young people I met, to feel reassured that all will be okay. But I’m also happy that I’ve helped myself. Starting up my personal blog about PKU (https://thepkulife.blogspot.com/) has enabled me to engage more with my PKU community online – I’ve “met” a whole bunch of new people over on Twitter! However, it’s very rare that I actually meet other people with PKU in person. So, it’s always a pleasant surprise when I do! At the conference, I met a man called Chris, who is a Community Ambassador for Metabolic Support UK. It was such a shock to discover that he has PKU too, but it was great to chat about our experiences.
I hope to continue to attend more events, such as Metabolic Support UK’s conferences, in the future and to continue to meet others like myself. I would encourage anyone, who isn’t already involved with Metabolic Support UK and NextGen, to get involved – it’s great to have another community, as well as NSPKU, to turn to if you ever need support.
Thank you to Chloe for sharing your experience of our NextGen Conference! We’re really glad you enjoyed the day and thank you for joining us and helping make our first NextGen Conference such a success!
When you have an Inherited Metabolic Disorder, going on holiday can be a little more complicated with having to consider transporting medication, supplements and managing your condition in a new place! This summer, our guest blogger, Chloe Easton (who has Phenylketonuria (PKU)), has been holidaying in Cornwall for a whole month! In the third part of Chloe’s guest blog series, Chloe is back from her adventures and letting us know how it all went!
To those who have been following my Cornwall blog series, here is the final part – a reflection of my trip now that I am back home in Yorkshire.
On Saturday 29th June, I returned home from my Cornwall adventure. A whole month away and what a month it has been. It definitely tested my emotions. I’ll be honest, there were times when I questioned if I was doing the right thing, even times when I felt like I wanted to come home. But most of all, there were times when I felt completely on top of the world. Despite all of these mixed emotions, it absolutely flew by, and in the end, I definitely didn’t feel ready to leave! However, now that I am home, it has been so lovely to settle back into home comforts and to, of course, see my family and friends again! Even though I feel incredibly grateful for being able to spend four weeks in my favourite place, Perranporth, it was tough to be away from my family at times. I am quite a family-orientated person. So, choosing to leave them behind and travel to the opposite end of the country was a pretty big step for me, but it is certainly one I don’t regret taking.
This time away has been so valuable to me. I have grown in confidence more than I ever imagined possible, not just in myself but in dealing with my PKU too. I had to take absolute control of everything, which was slightly overwhelming but I am proud of myself for doing it. Most importantly, I have reminded myself that my metabolic condition shouldn’t ever stop me from doing anything in life. Honestly, this trip is one that I dreamed of making for years. I distinctly remember from around the age of twelve, sitting in class with my best friend and constantly talking about my plans to make it happen – I am just so incredibly happy and grateful that I did finally make it happen. I don’t doubt that this is an experience that will stay with me for the rest of my life and it’s definitely not the last time I will be taking a solo trip away!
My top tips for travelling solo:
Plan and consider how you will manage your metabolic condition whilst away – this may seem obvious to some people, but by undertaking some careful planning (for example, how you will transport medication) you will ensure that your trip runs smoothly!
Go out and make the most of each day – even if the weather isn’t on your side (if you’re travelling abroad you probably won’t have this concern), you should go out and do something. It doesn’t have to be an elaborate day out, you might just like to sit in a local cafe or pub. On colder days in Cornwall, I got into the habit of sitting in The Watering Hole (a pub on Perranporth Beach) with a coke. I just loved taking in the sea views and found it to be a perfect place for getting some writing done.
Don’t be afraid of chatting to new people – this was quite a big thing for me and it did take me a while to pluck up the courage to do this, but in the end I’m glad that I did! The one catch with travelling solo is that there are inevitably going to be periods of loneliness. However, it was easier than I thought to start up little conversations – I got chatting to the workers in a local surf shop where I regularly hired out a surf board and I also made friends with a German lady who was on a coach trip I did, which was really lovely.
Most of all, try not to stress and enjoy your trip! No doubt you will have worries; I was so anxious that my medication wouldn’t be delivered and how I would cope so far away from my family, but I tried not to let this overrule the excitement of the trip and didn’t let it stop me from truly enjoying every moment.
Thank you to Chloe for sharing all her great updates of her Cornwall trip and for some wonderful tips on how your condition need not stop you from travelling and how you can make your travel goals happen!
Chloe also has her own personal blog where she shares her experiences of living with PKU. You can read her blog here:https://t.co/GaNPoBcy7X
When you have an Inherited Metabolic Disorder, going on holiday can be a little more complicated with having to consider transporting medication, supplements and managing your condition in a new place! This summer, our guest blogger, Chloe Easton (who has Phenylketonuria (PKU)), is travelling to Cornwall for a whole month! In the first part of Chloe’s guest blog series, she explains her reasons for making the big trip and the preparations she’s made to allow her trip to run as smoothly as possible!
My name is Chloe. I’m 21 years old and I have Phenylketonuria (PKU). I’m currently preparing to embark on a very exciting journey, which is now just around the corner. At the beginning of June, I am headed to Cornwall for an entire month, on my own! I think some people, to whom I have told my plans were surprised to learn that I am travelling that far alone (I am from South Yorkshire. So, it’s going to be a long journey!), but to me this is a dream come true and something that has been on my bucket list for many years now.
I feel as if I have partly grown up in Cornwall, as every year, without fail, my family and I have holidayed along the Cornish coast and so over the years I have grown to absolutely adore the place. If you have never been to Cornwall, I would say that you absolutely must experience it! It’s such a beautiful part of the UK and (bonus) if you’re lucky enough to have some sunshine it can feel like you’re abroad. It is my true dream to one day live down there permanently and for many years now I have always wanted to spend a long length of time there if I could, even for just a summer. Now, having graduated from university and no real attachments holding me back, this felt like the right time to go for it. I never imagined that I would do it on my own and as it approaches nearer, I can’t quite believe that it’s going to happen, but I am certainly excited at the prospect of having so much time to myself in a place that I love.
How do I plan to spend my time there?
Many people have asked what it is I’m actually planning on doing when I get there. Initially I was going to work, but then my parents pointed out that why would I travel seven hours down the country after working so hard all year to save up money to then go back to work? I realised they were right – this is something I have truly always wanted to do. So, I intend to relish every moment of it that I can. I am staying somewhere that is extremely familiar to me, but I will most likely be venturing out to explore some new places whilst also spending my time bodyboarding, surfing and writing!
How do I plan on managing my metabolic condition?
Whilst I don’t like to let my metabolic disorder (PKU) get in the way of things, I have had to undertake some careful planning to ensure that I am still able to enjoy my trip as well as manage my diet. In terms of tackling my diet on my own, I feel somewhat prepared for this because of university. Three years of living away from home has given me the valuable experience I’ll need. But I have had other more challenging factors to contend with – like how I intend on transporting an entire month’s worth of supplement (along with all my belongings) down to Cornwall on the train. I am not the best at packing “light” anyway, but my PKU certainly doesn’t make this any easier. However, after speaking with my dietitian, we came up with the solution of having my supplies actually delivered to me down south. All I had to do was contact the holiday company in Cornwall to ask for their permission to have my medication delivered to their offices, with which they had no issue. My dietitian then spoke with the company who deliver my supplement and arranged this with them. Now, all that is left to do is cross my fingers and hope it all works out as planned. Although, I am going to be taking a few days’ worth of supplement with me just in case there are any issues.
Thank you to Chloe for sharing her experiences of preparing for her big trip away! We hope you have an amazing time and we can’t wait to hear how you get on! Chloe will be updating us on her adventures half-way through her stay on our blog.
Chloe also has her own personal blog where she shares her experiences of living with PKU. You can read her blog here: https://t.co/GaNPoBcy7X
In November, we launched our Community Ambassador programme. We recruited 8 amazing Ambassadors, who are supporting the Inherited Metabolic Disorders community in their local areas, enabling us to reach many more patients and families. They are also helping us spread the word by raising awareness and fundraising.
In this blog post, we’d like you to meet our Ambassador, Chris Leaney!
I have Phenylketonuria (PKU) and had heard of the great work the team do for people with this condition and others.
How are you planning to raise awareness about the services Metabolic Support UK provide?
By using contacts I’ve made over the years in TV, radio and YouTube, to put on a large event each year.
Where is the strangest place you have raised awareness about Inherited Metabolic Disorders?
A small food festival in West Wales in August 2018, where I talked about living with PKU.
What’s the hardest thing about living, or living with someone, with an Inherited Metabolic Disorder?
Lack of understanding of the condition you have and constantly explaining all about it.
In the IMD community, who has had the greatest impact upon you?
Professor Heinz Wolff was my first PKU consultant at Great Ormond Street when I was born. He and Dr Mike Champion at Guys & St Thomas’ Hospital guided me.
What’s in your fridge?
A lot of vegetarian products and packs of Actimel.
Favourite comfort food?
As a child with PKU, potato was always my favourite food. As I am older, I love rice pudding – my go-to food!
Strictly Come Dancing, I’m a Celebrity, or Great British Bake Off?
This year, it was definitely Strictly, as a person I’ve worked with was on it.
What was the last film you watched?
It was Bohemian Rhapsody at the cinema, with the fantastic Rami Malek.
Caribbean beach or snow top mountains?
I’m a gold medal skier. So, I’ll go with a snow-covered mountain tops. Although, I do love St Lucia.
What would be a good theme song for your life?
“Let Me Entertain You” by Robbie Williams. At school, I was always the joker and I now love putting on big charity events, to entertain people.
Who do you follow on Twitter?
I follow sportsmen and women, actors and actresses, a lot of musicians and TV personalities I have worked with for other charities, and many YouTubers.
If you were given an extra hour today, how would you spend it?
With my son; he is my greatest achievement and I love being around him.
We look forward to hearing what events Chris organises in his new Ambassador role and thank you so much to Chris for helping us raise awareness of Inherited Metabolic Disorders. Your support is hugely appreciated.
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:
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!
Living with PKU means that sometimes I have to eat special low-protein foods and my meals often have to
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
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!