We spoke to a number of PKU patients to find out how they stay motivated and live their best low-protein lives.

Attitude is everything

"On the one hand, you can say, 'I have this, and I'm going to let it limit my life.' Or you can just say, 'Yes, I have this, but who cares? I'm going to do what I want anyway.' The last one is how I look at it."

Lucy, student at the University of Dundee

The only limitation is you

The key message is simple and encouraging: PKU doesn't have to limit you from chasing your dreams. The biggest challenge is good planning, but it is certainly not insurmountable. My advice to other PKU people: don't let your diet affect your ambitions. With discipline and good organization, anything is possible.

Raffael Villers, Switzerland

You're good enough, you can live your best life

With so many options, so much variety in nutrition and so much support these days – PKU doesn't stop you from living a full life. It doesn't make you less competent or less human; You are good enough and you will be able to achieve what you want in life. You just have to go for it and not let it stop you from doing what you want to do!

Karen Donaghy, UK

Accept it

In the end, I have this condition and I have to deal with it as best I can; If I don't, I won't get where I want to be.

Karen Donaghy, UK

Your mental health is important

To all PKU people on the road to wellbeing: the diet is worth it! My concentration, memory and headaches have improved. I am doing very well since I started following the diet again. Even my depression has gotten a little better. I want to tell all PKU people: don't stop dieting. Hang in there! You can live an extraordinary life with PKU. I am completely satisfied and happy. It's all worth it.

Sonja Zibusch, Austria

Find people who understand you

I've found that my protein substitutes are a good indicator of how long a relationship lasts. I know when a relationship will last a while if someone is willing to taste my low-protein drink. They really get points for that! We must have been dating for a while – it doesn't have to be on the first date – but it has certainly happened two or three times that someone was willing to try it. Then I think: "Oh, that's interesting!" And those relationships have lasted longer than relationships in which someone didn't want to try. The fact that someone even suggests trying it themselves without me saying anything... That's a good sign! I'm not saying I've never been in a relationship with someone who hasn't tasted it; But relationships with those who have tasted it do last longer! My tip is to find people who understand you and your condition, unconditionally. It makes life so much easier when you have the right love and support.

Gwen, Ireland

Approach it with a fresh perspective

I would never consider PKU a disease or condition, and it annoys me when people refer to it that way. I've turned to people and said, "Oh, okay... Do I look sick? Because I certainly don't feel sick." It is not a disease. I don't see it as a disease but as a condition where I have to watch my diet.

Louise, UK