PKU Awareness Month Challenge

May is PKU Awareness month in the US. The NPKUA are running a fundraising exercise challenge called "Move Your Pheet", so expect to see that on your socials in the next week or so. For those of us elsewhere, I've come up with a challenge:

Choose to tell someone about PKU.

Telling someone that you have PKU, or about the condition, really can make it easier to stick to the diet. I’ve become more comfortable about describing my diet over the years, it is a part of me just like the blonde(ish) hair and blue eyes it bestows. However, when I was younger it wasn’t fun to have to explain it all the time.

No one wants to be different. Over time, I leaned that life is easier if the people you hang round with know you were born with a medical condition that means you have to be very careful about what you eat and take daily medical supplements.

That may be as much as you want to tell them, or you might want to explain more. It is entirely up to you and how comfortable you are with them. But telling someone close to you that you have PKU can really help you to stick with the diet.

I don’t apologise for my PKU

Tell who you want only what you want.

One thing I will say is that I don’t apologise for my PKU. Do you expect a diabetic to apologise for needing insulin, or asking for low sugar alternatives? But equally, I don’t expect people to understand PKU instantly, we are the experts remember.

When you chose to speak about the diet, it can be easier to have a few answers ready for their FAQs:

PKU FAQ's

Can people with PKU eat out?

Of course we can eat out but we might need to be a bit more careful about where. A steak restaurant is not ideal, but salad and fries in a pub can be found anywhere. Yes that’s a boring lunch but the rush into plant based diets is helping a long with the PKU diet.
Often I’ll order several sides instead of a main as everyone does veggies sides like spring greens & lots of places do sweet potato fries/ wedges now which are protein free.

Can I make PKU foods for you?

People will want to host for you, I'm working on making this easier for those around me. It helps if your friends know about your PKU, but it is not necessary. Many people are vegetarian or vegan, meaning hosting a bbq without a few veggies & salad is odd. Ask if you can take something along for your main, like marinated eggplant steaks, Violife halloumi or one of the new supermarket jackfruit offerings.

If you don’t feel comfortable with that, ask what is in the vegetables & salads. Take your supplement to fill you up, and consider taking a smoothie as your drink - these can be very filling.

What about PKU snacks?

Fruit is always a good call, and bananas & mandarins are amazing. Protein-free & healthy, they even come in their own packaging so don’t need washed.

Alternatively, lots of breakfast bars are around 1g of protein. This is where we get to ignore the ‘healthy’ or ‘ancient grain’ labels and go for the chocolate ones. Often the double chocolate chip rice bars have less protein than dry rock-hard nutty bars.

PKU brunch ideas?

If your friends or family are tucking into a fry up, join them with tomatoes, mushrooms, onion rings, and an exchange of beans or hash browns. Or go healthy and have a smoothie, so many places offer different recipes based on protein-free fruit, vegetables, juice or coconut milk.

(Side note: I’ve been known to have apple crumble for brunch as it was the most attractive low protein option on the menu. Low protein is my priority, so I bend the other ‘meal time’ rules to fit that in.)

Do you have any PKU tips to share?

Hopefully you find that more people knowing that you need to take extra care over what you eat will help you to feel less stressed and happier in the long run. Do you have tips for raising awareness or your own tips to share? Did it work for you? Reply to this email, or let me know in the comments.