thedogsbollix

This is a question I love to answer, but one you might not want to hear answered. I am from Scotland and prescriptions (supplements, low protein food etc.) are FREE, hospital visits are FREE. The supplements are very expensive so I'm so glad I don't have to pay for them.

I get very annoyed when I hear other countries have to pay for these things, (countries that are supposedly better than Scotland!) especially with a condition like mine which requires a lot of prescriptions. Its insane.

Thanks for your concern but it really has not been too tough, I'm very used to it now, its certainly a conversation starter at least!

I am incredibly glad, It was the best stabbing I have ever had! Why wouldn't I be glad?

I find it hard to stick to regular meal routine like most people and there is very little variety in what I eat. I get prescription foods that have no protein that help a lot so mostly for evening meal I have some form of pasta with a vegetable sauce. Lunch varies a lot. I can have 5g as I mentioned so I can eat some regular snacks like cereal bars. I make my own bread and use it for toast and sandwiches. I eat a lot of fruit and veg or soup. And breakfast is usually a small bit of cereal with fruit and a cereal bar.

It is indeed a genetic disorder, my parents were both carriers for PKU, so my sister also has it, but I have another sister who does not. There is a chance my children could have it but I think it would be better for me to have a child with PKU than someone who doesn't know anything about it, even though my parents knew nothing about it and I turned out fine!

EDIT Thanks everyone for your concern about my children. Its quite far down the line so I'm not worried about it yet, I haven't given it much thought. But I would like to have a child with the person I love.

Good question. Coffee and tea are fine, but the milk and cream in things like lattes or most Starbucks coffees are a no-go. Diet drinks, like diet coke I also cannot have because of the sweetener aspartame. You will notice on the side of bottles and cans of these that it says "Contains a source of Phenylalanine" which is specifically for people like me.

For Alcohol, Cider, spirits and wine are all fine, but Lager and stouts (Guinness) and Ales all contain some protein so I couldn't have more than 1. Cream liqueur (Baileys) ale contains protein. Personally I drink Cider, with the rare beer, spirit or wine.