Hello! My name is Katherine Ramsay and I am a 27 year old adult living with PKU. I am going to share my experiences of growing up with PKU.
Growing up with PKU
As a child, my mum oversaw everything to do with my diet. Hospital appointments, blood tests and of course, all the emotional break downs. At times I made it hard for my family, crying for foods that were too high in phe and refusing to try any new foods my dad tried to introduce.
I was a very picky eater, all I wanted to eat was chips. I am sure this will resonate with many families with young PKU’ers. I could be very challenging for my parents if my levels were high, being very tired, irritable and a little bit naughty.
Then, once a week, the dreaded blood test! I would hide and lock myself in the bathroom to not have my bloods done.
I was very lucky to have a family that were dedicated to making sure I was achieving my potential. Although I made it difficult for them, they did a great job. My PKU was controlled well, everything that touched my lips was recorded in a food diary and my blood levels were regularly good.
I was growing appropriately for my age and stage of development. My mum had encountered untreated PKU and was determined that I was to have the same opportunities as my sister. My mum primarily took control of the routines involved with my PKU. However, when I started High School, my mum took a step back and allowed me to have more responsibility.
Around this time, I decided to change my protein substitutes to tablets instead of a shake drink. At the time I felt this would be more normal. “People take tablets all the time”, I thought, but PKU tablets were big and I had to take 80 per day!
Being a Teenager with PKU
Having PKU made it difficult for certain rights of passage such as doing your typical teenage things: sleepovers, socialising, eating out and messing around in the local park.
The teenage years are already a hard time when you think the world is against you. When you’re a teenager you just want to be accepted and not worry about seeming different from your peers. I found it difficult fitting in and making new friends, always thinking at the back of my mind that I have PKU. I always worried about people not understanding how serious PKU is and thinking I was making it up.
I soon let my worries of acceptance consume me as I started going off diet and socialising more. I would eat chocolate, pizza and other junk food. I started to refuse to get bloods done because I knew the levels would be high. Due to raging hormones, my mum and I would clash terribly. Looking back, my mum was just worried and unbeknownst to me she was contacting my dietitian with all her fears about the troubles I was experiencing. I had started to flush my protein substitutes down the toilet and hide them in places so that I did not have to take them. This all led to my downward spiral and in my most important year at school, I began to struggle with my mental health.
I developed anxiety, which led to me dropping a class. During this time, I saw a psychologist who helped support me with anxiety and the anger problems that I was directing at my mum. This was quite a difficult time for me, but it made me stronger. I think it was an important part of my life because I never want to feel like that again. I now know that if I take my protein substitutes and I am strict on my diet, I can achieve anything! In hindsight I feel I could have done better at school but although this was a difficult time, I was still able to volunteer at a local girl guides, hold down two part time jobs and pass all my exams.
Not all doom and gloom
I was so lucky to have a good group of friends that were so supportive. My friends always made an effort to think about me when we were choosing places to eat out. Over the years they have made me low protein cakes for my birthday, making me feel included. During nights out, they would check labels for phenylalanine and aspartame, having my back when I may have had one too many. My friends would help me when we would meet new people and step in and explain what my PKU was all about. One of friends would even boast to people about how many tablets I took. When I changed my medicine again to a drink, she said “only three drinks a day, how boring!”. If you want to know more about why I changed back to a drink, keep an eye on www.vitafriendspku.co.uk for my blog post about moving to GMP. It’s important to remember that if your friends are true friends, they will have your back no matter what.
Where I am now?
Now I am back on a controlled diet, taking a new protein substitute, doing regular blood tests and taking care of my physical and mental wellbeing. After leaving high school I progressed onto college for two years and completed a degree in Childhood Studies. Recently, I have been promoted to a managerial post of Team Leader Child Development Officer. My PKU has never been a barrier for what I can do and achieve but I must always make sure that it’s under good control and manage it well, so that I can have a normal life. As a teenager I couldn’t see it but it’s so important to look after yourself.