Real Voices interview: Julie Wilson
Meet Julie, a nursery assistant living with phenylketonuria
How does phenylketonuria affect you?
People with phenylketonuria (PKU) are advised to avoid high-protein foods (eg meat and cheese), which means I’ve had to follow a special very-low-protein diet since I was born. The diet is based on exchanges. They’re the amount of phenylalanine the dietitian at the hospital says I can have each day, based on the levels in my blood. When I was five, I could have three exchanges a day, now I can have ten – that’s equivalent to one small slice of bread and three tablespoons of baked beans. We have our own special PKU foods: milk, bread, pasta, cakes, biscuits and flour, which we get on prescription from the doctor, and the hospital dietitian tells us about new PKU foods and recipes.
How do you know if you have too much or too little phenylalanine?
Each person is affected differently. If levels are too high or low, people feel tired or ill, or they get a headache and can’t concentrate. For some people, including me, our eyes change. They’re normally hazel green, but if I’m under the weather and my phenylalanine levels are high, they turn piercing blue.
How often are your levels checked?
You’re supposed to check your blood phenylalanine levels every couple of weeks or so. I don’t do it that often, because I’ve got used to knowing if I’ve had too much or not enough phenylalanine from how I feel.
What does the test involve?
The test uses a Guthrie card. You prick your finger and squeeze blood into four little circles, then fill out your name, address and the date. You have to say if you’ve had a cold too, because if you’re run down your phenylalanine levels are higher. You send the card off and get the results back four days later, which tell you if your exchanges need to go up or down.
Is it hard watching others eating food you can’t have?
It’s not too bad, as I’ve never known any different. I remember when I was about seven going to McDonalds with other kids with PKU I met through the National Society for PKU [NSPKU]. We got some strange looks because we all had our scales out weighing our food, but for us it was normal. From an early age my mum used to say what I could and couldn’t eat, and I’ve stood by that.
Has it affected your career?
Although I can’t taste much food, I’m a qualified chef. I don’t work as a chef any more, but this was not because of PKU but because I was offered a new career and wanted a new challenge. I never let PKU stop me doing anything in life – that’s been my rule from a young age.