My life with PKU

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  • Welcome
    Hi, my name is Nicola Bramley and I would like to share some experiences with you about my life with PKU (so far)

    Bonjour et bienvenue a ESPKU 2012. Je suis Nicola Bramley et je vais vous parler de mes experiences avec PKU pendant ma vie

    Buongiorno e benvenuti a ESPKU 2012. Sono Nicola Bramley et voglio parlarvi di mie esperienze con PKU nella mia vita

    Just thought I’d make our European guests feel a little more comfortable...

    memories of PKU
    Starting from my first clear memories of PKU, I was about 4 or 5. PKU was something that I, despite my young age, thought about quite a lot. That was back in the days of 4 exchanges where my protein allowance solely came from packets of Quavers and squirty cream. The most vivid memory of PKU at that age was my supplement, the Aminogram paste. To make it seem more child-friendly and easier to pronounce, Mum renamed the paste ‘Narney.’ I hated the stuff. Mum added banana Nesquik powder to it to make it seem more like a milkshake than paste but it didn’t work. Just watching her mix it in the morning, all the lumps and that wretched smell made me feel sick. I would dread taking it every time, so when I came into the kitchen one day to take the grisly substance and I saw that the bowl was empty, I thought God had taken pity on me and that I wouldn’t need to take it today. But nothing gets past my Mum. And so the investigation began. Initially Mum looked in all the nooks and crannies of the house, thinking I’d hidden it to avoid taking it. But the surprise came when Mum found my baby brother and cat in the conservatory, looking innocently up at her with a yellow paste around their mouths and on their noses. That’s right, my cat and my brother ate my supplement. And stranger still, they enjoyed it. My brother told me only the other day that he missed Narney and wished I would go back on it. Robbie, if you’re listening now, that is never going to happen.

    When I was about 7, my parents were both in full-time jobs and so me and my brother had to be child-minded. Now I’m not sure what this says about me and Robbie but we managed to get through 4 childminders in the space of about 7 years. However, our second child-minder was called Carol Moore and she lived down the other end of my village. Out of all the childminders we went through, Carol was the most attentive to my diet and she always made me feel comfortable around her own family when we sat down for meals. She has 3 children, Elizabeth and Douglas who are a few years older than me and Nick who is my age and who I’ve grown up with. It was nice to have Nick around in primary school as he would always inform our friends about why I was eating “strange” food in the canteen. Carol liked to host a lot of garden parties, which makes sense as she has an enormous paddock behind her house. During the summer there was one party where she had provided a lot of ice-cream for the guests as it was a scorching hot day. I was looking longingly at them, wishing I had enough exchanges to have one myself. But then Carol tapped me on the shoulder and opened a large Tupperware and said “I haven’t forgotten you! This is some special ice cream I made for you.” It was basically frozen strawberry juice with mini strawberries frozen in but it meant so much to me that Carol had remembered me and what’s more, it was delicious!

    my first school trip away from home
    Now I’d like to talk about my first school trip away from home. I know that a lot of PKUs have a problem with going away because it’s supposedly more difficult to deal with the diet on your own or in a foreign place. But I can’t stress this enough: it’s not as hard as you think. Please don’t ever be put off from school trips because of your diet. You will miss so many great times and learning opportunities when it is so much easier than you’d ever imagine. I was very young when I went away on my first school trip. I was in Year 3, so I was maybe 7, when we went away with the rest of my year and the Year 4s to Cuffley Camp for a week. Cuffley was only a half an hour drive away so that parents could pick their kids up if they got hurt or too homesick and infact a lot of kids did, but I was determined not to be one of them! My diet was very easy to sort out. I requested a menu for the week I would be staying before I left and me and mum sorted out what food may be similar (e.g If it was Spaghetti Bolognese then we packed Loprofin spaghetti and a jar of tomato pasta sauce) and then handed out own version of the menu and all my food to the kitchen staff and they took it from there. I did have to queue separately for my food but that was ok because these places get a lot of dietry requirements so I just queued up with some fellow coeliacs and vegans! And once all my food was sorted, I just enjoyed myself! I went mountain biking, had a go at circus skills and joined in plenty of water fights! So to any teens listening to this talk, I’m telling you that you can make so many good memories from trips like these so if you get the opportunity then don’t hesitate. Do it. Because let’s face it, if a 7-year-old can do it, so can you!

    primary school
    Throughout the years of primary school I think I must’ve tried every single supplement available. I tried the gels, various drinks and even Phlexy 10 bars which I don’t think exist anymore. Of course none of them were any better than Narney and still I dreaded every meal, knowing what awaited me after I’d eaten. Then when I went on one of the NSPKU camping trips to the Forest of Dean, I saw one of the other girls taking Amingram tablets. She said it was quick, convenient and she couldn’t taste anything so I thought it had to be worth a try. I hastily took just one and it was brilliant. Sure, I’d have to take 50 a day but it was worth it to not have to taste anything. I got quicker and quicker at taking them, almost turning it into a game to see how fast I could take them. Then I got more adventurous and decided to take 2 at a time, then 3 then 4. I can now take 13 tablets at a time. I believed this was a world record until my friend and fellow PKU, Louis Bailey, informed me that he could take 20 in one. As gutted as I am that I am not longer reigning champion tablet swallower, it’s still a great party trick. The look on people’s faces when I show them what I can do remains priceless.

    secondary school
    However, not everyone thought my skills were impressive. When I arrived at secondary school for my first lunchtime in a big-girl canteen, I confidently took out my tablets as my new friends stared, both intrigued and impressed. Popping my tablets, my confidence was soaring. Unfortunately my showing-off had attracted some unwanted attention. Scowling at me from a corner, a dinner lady came over and sat down next to me. After a few awkward moments of silence from everyone at the table, she said quietly “And what might those be Missy?”
    “They’re my protein supplement tablets. I have a condition, the nurse knows!” I stammered
    “Well, just in case, I’m gonna take these and get a few questions answered, ok?” she said, taking my tablets off me and eyeing them suspiciously.
    I just sat there with my friends in silence. My first thought was ‘But I needed those...’ My second thought was ‘Great. That dinnerlady thinks I am a drugs mule. Great first day Nic!’ Of course, not being a drug mule, I never heard anything else from that dinner lady over the 7 years I was in secondary school. But now I think about it, I do wonder what she did with those tablets. Did she take them? Or maybe they’re hanging in a frame on her mantelpiece of a reminder of the day she caught the infamous 11-year-old drug mule from Hertfordshire. Personally, I’m going for the second one.

    PKU clinic
    Just as I started Year 8, my next PKU clinic check-up was due. I always enjoyed these as it usually involved doing some PKU cooking whilst the parents talked in the other room about the boring stuff. After cooking up some bread and fairy cakes, me and my dad went in for a talk with my consultant. We went over the usual things ‘how’s school?’ and ‘what supplement are you on?’ but then she asked about my exchanges. I had been on 6 for as long as I could remember and I hated it. It meant my diet was so restrictive and I envied anyone who had more than me. So the dietician suggested that maybe I could go up to 7 exchanges so long as I did a blood test every 2 weeks to monitor my blood levels. I was ecstatic. Just one exchange more made such a big difference. It meant I could have a packet of walkers instead of low-protein quavers or a whole Milky Way bar instead of just half. At the end of two weeks we did the blood test and the results came back exactly the same. So we thought maybe I could go up one more exchange and phoned the dietician. This carried on for months and by the end of 3 months I was on 13 exchanges, a massive improvement and change to my dietary life. Although I was told to be careful because my levels could soar at any point as they thought the change occurred because of a growth spurt, I’m still on 13 exchanges today.

    By the time I had reached Year 9 I had been on 5 school trips to various places in England. Two were at Cuffley Camp and the other three were around Torquay and Devon. Then during assembly in Year 9, we were offered the opportunity to participate on a French exchange to Dijon. I was instantly drawn to the idea because I love languages and interacting with new people. But then I thought about my diet and thought that it might be too tricky. I talked to Mum about it and she said that she wanted me to do the exchange because of the educational and social benefits and that if I can handle my diet in England, why shouldn’t I be able to in France? So I submitted my form, and 4 months later, bags packed, I was on my way to Dijon. Mum had packed a crate of PKU foods; pasta, bread rolls, cracker breads, biscuits, tablets, you name it, I had it. The funny thing is that I came home a week later having used only 3 things from that crate! My exchange, Marie Camille and her family were fantastic with the diet, despite the language barrier. Her mum cooked me ratatouille every night which is a tasty vegetable stew and they cooked my pasta and made sure there was always plenty of salad and fruit salad to help fill me up. After this successful exchange, I was hooked! The next year I went on the Italian exchange to a town called Arona which is on the banks of Lake Maggiore where I stayed with my exchange, Daniele. It was a lot easier to cater for my diet in Italy because the Italian eat pasta for every meal! This was my favourite exchange and made me realise that I wanted Italy and it’s culture to be a part of my life forever, hence my decision to study Italian at Leeds University, which is where I am right now. One year later, I played host to a Japanese exchange called Akiha. I couldn’t afford to go to Japan afterwards but I was happy to have her because she taught us how to make all kinds of Japanese dishes. One day we made ‘mochi’ which are little dumplings made of rice flour, which meant I could try them too. Unfortunately they were horrible but it was nice to have someone to teach me about how they eat rather than me telling other the whole time. Finally, this year I played host to a Sicilian girl called Brigitta. She stayed with us for 3 weeks. Unfortunately Brigitta did not anticipate the weather in England and only brought one pair of jeans and 2 cardigans which made going out when it was cold and rainy (which this summer was every day!) pretty difficult. So instead we made various PKU cakes and snacks including brownies (which were her clear favourite!), raspberry muffins and Cornish cream teas. She told me that she never cooks at home whereas I am always cooking, so I thought I’d give her a few ideas to take home with her whilst showing her that PKU food can be tasty too.

    eating habits
    Over these past few years, my family and boyfriend started to realise something strange about my eating habits. Although I see nothing wrong with me myself, my family have noticed an irrational protectiveness over my food. This has become known as the ‘Niki doesn’t share food’ theory. And it drives everyone insane. My mum thinks it’s a psychological thing because 1. I’m so used to having my own food because I can’t eat what others are having and 2. Because when I finally am allowed to use a few exchanges on something nice, I never really get much of it so why would I want to share it? I first started noticing it myself whilst on our holiday in Thailand two years ago. We went for breakfast at a Thai beach cafe and they did the most amazing banana pancakes. I was only allowed one because of the protein in it and was just about to finish my last quarter when my brother asked ‘Can I try a bit?’
    ‘No, you’ve got your own breakfast,’ I said, covering my plate
    ‘Oh go on, let him have a bit’ said Dad, reaching his fork over to my plate
    And before he could get there I stuffed the whole thing into my mouth. Needless to say I had to chew for a very long time to finish it but there was just no way I was letting anyone get to my pancake! My whole family just stared at me, and Mum said ‘I think we have a problem here...’ I don’t see a problem. It was my food and it was awesome. But then my boyfriend, Matt, started to notice the same thing. If we were having a McDonalds together, I would steal his chips but as soon as his hand started reaching across the table, I’d slap it away and start scoffing them even faster. When I was round for dinner one night at Matt’s house, he was explaining my strange behaviour to his parents whilst I was sitting there saying ‘oh it’s not a big deal.’ Once he’d finished, I expected them to agree with him but instead they said ‘No I can see why that is. She’s had to grow up not being able to eat the things we eat so when she finally can, let her enjoy it, don’t take it away from her.’ And I thought that was the perfect explanation. Now I don’t want to worry anyone here by saying this is what all PKUs are like, I just thought it might be an interesting and funny story to share but you can make up your own minds if you think my no-sharing rule is justifiable or not.

    In 2009, I met my boyfriend Matt. We’ve been together for over three years now and so it’s safe to say he’s had a lot of time to learn about PKU. When I first went round his house when I was fifteen, I was terrified of causing his parents hassle in the kitchen when it came to making dinner for me so I vowed I would never eat round his house. Well, that was short-lived. Matt’s family (his Dad, Mark, his Mum, Nathalie and his sister, Amy) were supportive from the start. They had no problem cooking my pasta for me and ordering special dishes for me on takeaway nights e.g. a vegetable curry and plain boiled rice when we had an Indian. One night, Nathalie even decided to make me my own pizza using Fate All Purpose Mix. However, not having experienced PKU cooking before, she got a bit muddled up and the pizza base mix went a bit lumpy and sticky. But in the end it tasted great, one of the best PKU pizza’s I ever had. However Nathalie didn’t think so and that was the day she started a vendetta against PKU flour. That vendetta still lives today. But I was determined for them to get back into PKU cooking. In 2011 I was lucky enough to have the opportunity to go to Thailand as our family holiday, as I’ve mentioned before. Whilst we were staying in the northern city of Chiang Mai, we took part in a Thai cooking course where we got to buy, make and eat five Thai meals of our choice. The family favourite was Thai Green Curry (using only vegetables for me) ; we managed to polish off 4 bowls of the stuff! After, we were given a recipe book each, with all the food we had cooked that day in it. When I got back, I showed this to Mark, who is known for his adventurous cooking and he said ‘We HAVE to give this a go!’ The next day the family and I went to Suffolk for a mini-holiday and, staying in a house with an enormous kitchen, we decided to give the green curry a go. And needless to say, it was a hit. Everyone loved it and once again there were four clean bowls! This just goes to show that getting people involved with your diet may not necessarily be a bad thing. Many PKUs are scared to let people know about their diet for fear that it’s too much hassle to others. But it can be a lot of fun and people would genuinely like to know more about it. After all, it’s not every day you meet people like us is it? I’d like to round off this section by mentioning that recently Matt and Nathalie did a Mother-Son 10k run and managed to raise £300 for the NSPKU. I went to watch this and I can tell you now it was a scorching hot day, one of the hottest of the year so extra well dones to you both!

    PKU events
    When I was younger I used to go to all the PKU children’s events. The Christmas Party, The Summer Picnic, Cookery Demos, you name it, I was there. But as I started to get older I started to feel more and more awkward at these kinds of events. Suddenly doing the hokey-cokey and blowing bubbles didn’t seem as much fun anymore. But I still wanted to be involved in them. So two years ago I turned my hand to volunteering. I’ve done work experience in a local primary school, in a children’s summer camp in France and been a private tutor to secondary school girls so interacting with the kids wasn’t a problem. The more I did it, the more I enjoyed it. My volunteering gig was at the Christmas party two years ago. I was told I was the face painter. Baring in mind I only scraped a B at GCSE art, I wasn’t too confident at first. But then I got more adventurous as I started to feel more comfortable and by the end of the night I was able to paint more complicated designs, like the bat on the little boy’s face in the picture on the slide. I enjoyed myself so much I decided to do it again the following year. This time I brought Matt with me as a ‘guest’ committee member (although he was gutted that he didn’t get a committee members badge!) Once the craft table had been cleared away, we started to organise raffle tickets by ripping them up and folding them and putting them in a box; boring work. So then my brother decides to turn up and distract Matt and that was when the madness started. Robbie had brought with him two Vitaflo PKU chocolate advent calendars. He came up with a challenge that he and Matt had to eat all 24 chocolates in as little time as possible. Matt accepted and then proceeded to win, finishing the calendar in 3 minutes. This was hilarious and for me, an excellent end to the party. However, riding in the car home with two very green-looking boys was quite a lot less hilarious.

    my speech
    Earlier this year I had a rare and amazing opportunity. I was asked to deliver a speech on behalf of the PKU community for a celebratory event on the importance of newborn screening. I wrote my speech myself and focused on what can happen if PKU isn’t screened for and what PKUs can achieve in life as a result of the screening. I arrived with my Dad at the gates of the Houses of Parliament, where we were shown to the Conference Marquee. There, we had some fantastic food (only the best for these MPs!) and I got to have a chat with Jenny Agutter, who is an ambassador for cystic fibrosis. Some of you may know her from her role as Roberta in The Railway Children or more recently in a recurring role in ‘Call the Midwife’ on BBC 1. Then it came to my speech. I was told it wasn’t going to be very formal but we were in Westminster, how could it not be formal? Once I’d finished, I came down from the podium to my Dad in floods of tears and I thought “What a sop!” But then I looked around and saw a few of the MPs, Baronesses and Lords with tears in their eyes! I was amazed that I actually managed to move these people so much; these people who I thought were so hardened by their political experience. I received many congratulations on my speech afterwards so me and Dad knew we had to celebrate. So we hopped on a train, McDonalds bound.

    exploring the world
    I’ve been really lucky to have grown up in a family with a love of travelling and exploring the world. With my family I’ve been all over Europe but also to Florida, South Africa and Thailand. But this year I decided I wanted to explore Europe in more depth and more importantly, on my own. The idea for doing an Inter-railing trip round Europe started out as some crazy idea me and a friend had one day when we were bored in class. But then I really started to consider the idea. I did have quite a lot of money saved up from the year before and Mum said she had done it twice with her cousin and that it was 100% worth doing. And so the idea began to take form. Me and my friend, Tessa, saved and tirelessly organised our trip and in June this year, after our A-Levels, we came to realise our dream. We travelled for 3 weeks using our Inter-rail tickets and a couple of flights and countless bus journeys. We managed to get round thirteen cities in 4 different countries; Paris, Rennes, Dijon, Bern, Milan, Venice, Florence, Rome, Naples, Madrid, Barcelona, San Sebastian and Biarritz. For some of you this may seem crazy. How would I be able to cope with the diet in all these different places and with only a budget of 20 Euros a day? Believe it or not, the budget made it easier. It meant that I wasn’t tempted to eat things that I wasn’t technically allowed. For example, pasta is far more expensive in a restaurant than a bowl of soup; therefore I wasn’t tempted to eat pasta. Some days when we just had no money at all we would literally just buy fruit and veg in a supermarket and ‘graze.’ The key to having a successful diet on a trip like this is confidence in the fact that you know your diet well and you can control yourself in what you should and shouldn’t eat. Of course, taking your supplement is a big must. For me it was crucial because 1. I needed the energy from my tablets to keep me going through all the walking and 2. Because the more tablets I ate, the lighter my backpack got! I can honestly say that travelling Europe was one of the best things I’ve ever done and the best holiday of my life so far. To see so much culture, beauty and excitement in just 4 countries was a real privilege and if there is one piece of advice I could ever give you, it would be to do a trip like this.

    Finally, I’d like to add a quick section about my new life at University. I am studying advanced Italian with electives in advanced French and beginners Mandarin at the University of Leeds. I’ve been there for a month and am loving every second of it. The thing I was most worried about when I got there was if my flatmates were going to be nice. It seemed a bit bleak when I arrived because I was the only who was in. But after a quick pre-uni shop at Sainsbury’s, I came back to find all my flatmates sharing a bottle of wine round the kitchen table. And we’ve been close ever since. Two of my flatmates, Jonny and Beth, have been particularly supportive with PKU. When I cook any recipes out of the Fate cookbook they are always my crash-test dummies and willingly try the food and approve it. Jonny, unfortunately, is a bit of a useless cook so I’ve taught him how to cook various dishes for himself including stir-fry and pasta bake. Having PKU means that I have a good knowledge of how to cook and work in the kitchen and can therefore help others with their own diets so to speak. We’ve not known each other very long but I feel like they’re already my best friends and I can talk to them about anything. I know that they’ll never judge me because of my PKU and I’m sure that in the future they’ll be nothing but supportive.

    Thank you for listening and I hope this has made you laugh, given you an honest account but most of all that it has helped anyone who is uncertain of a future with PKU.

    Thank You, Merci Beaucoup, Grazie Mille, Danke schon, Obrigada, Gracias

    author: Nicola Bramley

    This is the original speech of Nicola Bramley from the E.S.PKU Meeting 2012 in Liverpool.
    Thanks for giving us a copy!

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