How it all started 

I'm Stephanie, 42 years old, and I have classic PKU that has been treated early. 

My PKU childhood was quite boring. My Phe levels only increased when I was sick or when I secretly ate the wrong food. My mother was fantastic and always taught me to pay close attention to my food. So much so that even as a small child I knew that I had to refuse delicacies that I was not allowed to eat. 

That said, I probably didn't have it as hard as other PKU kids (everyone's tolerance is different) because mine was 800mg of Phe per day. 

Then came my rebellious teenage years 

After years of successfully treating my PKU, my doctor told me I could slow down on my diet. My teenage brain thought this meant that I didn't have to think about it as often and that I was full of rough estimates. 

So my downward spiral slowly started. I was a vegetarian at the time and started eating a dairy product every now and then. In addition, I no longer took amino acid preparations. But I thought I was fine. My Phe levels remained within the recommended range for adults, even below 15 mg/dl Phe in the blood. 

Everything seemed to be going well. I had my blood drawn regularly and went to the metabolism clinic once a year. I liked this way of eating. No nutritional deficiencies were found and I had no concentration problems or headaches. 

I got married and wanted a baby 

I got married at the age of 23 and knew right away that I wanted children. That meant I had to go back on the PKU diet. 

I was trying to get into the rhythm for about eight weeks and had no problems with my low-protein diet and my amino acid mixtures. I was all set, knowing that I was doing it for my future baby. 

My daughter was born healthy in 2001. And right after that, I dropped the diet and fell back into old patterns — eating everyday foods that were as low in protein as possible — at first, at least. 

I felt untouchable! 

As life became more hectic (raising a baby is a lot of work), I started making more exceptions and used more excuses to eat pieces of meat, pizzas with cheese, yogurt, and plain bread and pasta. Somehow I managed, despite my cheating. My Phe levels remained below 20 mg/dl. 

But then it went badly! 

After a few months of eating (basically) whatever I wanted, I started to get tired. And not just 'yawn tired'. I became 'tired to my bones'. Almost 'as if I melted tired'. I had trouble getting out of bed and couldn't finish the simplest tasks even after getting 8 hours of sleep. 

The only thing I focused on was getting through half my working day for the sake of my family. At lunchtime I came home and collapsed. I slept and slept and still felt exhausted. By 5:00 pm I needed another nap. 

Once we had eaten and were ready to watch TV, I plopped down on the couch until bedtime, after which I went to bed and slept some more. My family teased me about it all the time: I got quite angry about it. Because being a tired, exhausted mother and wife, that's not who I am. 

I kept making excuses for my exhaustion, from blaming my work stress and household chores to blaming my fatigue on the pressures of raising a child. But even on vacation, when I had few responsibilities, I felt completely exhausted. 

So I had my blood checked and despite my exhaustion, all values were within normal limits. I was even given a measuring device to check my breathing and sleep to see if it could be sleep apnea. People with sleep apnea occasionally stop breathing at night – which prevents them from sleeping well – and are tired all day – but still nothing. My breathing was fine. I knew something wasn't right. 

But because I didn't see results right away, I succumbed and fell back into all my old bad habits. The fatigue got worse, the brain fog was so bad that I couldn't think, and I became more depressed by the day. - Stephanie

I realized; This is crazy. 

After struggling through my days, something changed in my brain. I realized that what I was doing to myself was insane. I couldn't go on like this any longer. I attended an information day about PKU at Hannover Medical School, where I saw the film 'The Forgotten Children', which touched my heart. Yes, when I was young and fit, I could mess around a bit, but I realized that my excessive protein intake would seriously affect my lifestyle and mental abilities as I got older. I had taken a dangerous path and I had to change something before it was too late. 

PING – I had my A-HA moment. 

I started searching the internet for new amino acid mixtures and low-protein foods. Together with my dietitian, I ordered samples from different companies, tried everything and finally informed the team at the metabolic clinic of my decision to follow a 'real' PKU diet. They gave me sensible, practical nutritional advice that helped me get back to my work, life and energy. And I also got help and support from other PKU people in the Nutricia Metabolics community. 

I couldn't have lived without them! 

I can only say to anyone who struggles every day with a self-destructive inner demon: just get started, hang in there, seek help, and talk about it! It's worth it in every way! - Stephanie

My comeback, a new attitude to life

I had the will, just started, and it worked: my goal was to get my Phe levels below 10 mg/dl. I have achieved that and I have kept it constant for two years now. And what's even better: that nauseous fatigue has disappeared! I am awake and alert, not so depressed anymore and I am interested in hobbies and activities again. I've gained a lot of quality of life and that's all the motivation I need to keep going, because I never want to be that miserable person again. 

You can do it too! 

Getting back on a low-protein diet is easier than you think! Do you know someone who is also ready for a comeback? Or are you like Stephanie? Contact your treating doctor or dietician who can guide you through the return to a low-protein diet.