You are more than your PKU!
Madison's Story, returning to diet as an adult.
I’m from near Southampton (UK), and am lucky enough to be diagnosed at birth with classical PKU. I currently take Sphere 20 lemon and have managed to incorporate it into my routine (still struggle with the food side of things lol).
Growing up with PKU
When growing up I remember so clearly my mum always doing her best to make me fresh meals, birthday cakes, take my roasts into school at Christmas. I’m so grateful for my mum doing this things for me, as my life could have been very different to what I have now.
My sister was also a good egg and encouraged me to drink my Maxamaid supplement by turning it into a game of who could drink it first. (She always won…if you know, you know 🤢😭) although lots of my childhood memories are foggy I’m always reminded of the amazing family I had growing up.
(Pauline's note: Maxamaid is an older PKU supplement for children. It's successor for adults is Maxamum and is still around.)
Secondary school and slipping away from the PKU diet
As I went through secondary school I had a hard time adjusting to the independence of taking my supplements at break time and eating the right foods. Slowly and surely the pressure of being different had me sneaking food at home, when I was out with my friends and always using food as a way to cope with struggling to manage my diet, teenage hormones and eating.
I’m so grateful for my mum ... my life could have been very different to what I have now
Returning to PKU diet, and positives
As for now, I’m 27 and currently going through the process of getting back on to my pku diet. This is proving challenging because of misunderstanding things, being used to ‘normal foods’ and just trying to reorganise my life to what I want/need.
Positives I take from this is that I don’t have a phobia of my monthly blood tests and have mastered taking my supplements before food/ spread out during the day.
Fitting PKU into a busy life
Whilst sorting my diet out I also work full time and study at college one day a week which sometimes proves difficult. But I know that if I want to succeed in life I need to do things that make me feel uncomfortable and conquer every fear I’ve had around my PKU (mainly learning to accept it).
Advice on returning to PKU diet
One word of advice I’d give to anyone returning to diet, keep trying and keep advocating for yourself! You can do this and always ask for support when you need it.
One piece of advice I’ve always had is don’t let PKU define YOU as a person. You are more than your PKU
You are more than your PKU!
Over and out,
Maddison :)
Pauline's note: Huge thanks to Madison for sharing her story. You can find more PKU Stories, or share your own at:
Pauline
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