Sapropterin trial, part 1: genetics & patience.
A year after I went in for blood tests to determine if my PKU would respond, I finally took my first dose of sapropterin.
Low Protein
About low protein diets and PKU (Phenylketonuria)
Happy Birthday to Living with PKU
Living with PKU hit NUMBER 1 in the Genetics hottest releases list. It also made the top 6 bestsellers list, up there with Richard Dawkins and Adam Rutherford.
The genetics of PKU
A simple run down of the genetics of PKU, and how that relates to sapropterin testing. I’m going for the “Explain like I’m five” version here!
PKU Raisin Scones
Tasty, fluffy, protein-free raisin scone recipe - with pictures and baking tips for people on Low Protein diets like PKU, Phenylketonuria.
Cucumber and avocado smoothie
Something a bit different for hot weather and PKU meals. I came across this as a recipe for a ‘no-cook’ soup but in both temperature and texture it is best described as a smoothie. 2g protein, Low Protein
Fennel and orange salad
Salads come to the fore in hot weather, helped along by the often overlooked fennel. This salad is 1g protien per serve, or can be made protein-free. You need to start this salad one hour before serving. Serves two as a main or four people as a side salad.
Fennel and 'cheese' salad
PKU and heatwave friendly 'no-cook' recipe fennel and 'cheese salad'. Can be made phe-free, low-protein, or add protein as needed.
Protein-free Carrot Cake
A protein-free carrot cake recipe with picutures. It is great for PKU celebrations or the occasional treat.
(0.45g of protein in the entire cake)
Newsletter 8 - January
How a new perspective might help you in 2023. Another new PKU treatment(!), & helping with PKU research. Plus, 5 ways to wellbeing through kindness. (Jan 2023 newsletter)
Campaign update at NSPKU2022.
Liz Twist MP spoke to the conference in her role as Chair of the All Party Parliamentary Group (APPG) for PKU. She began by extolling the difference which Sapropterin makes for those who respond, but she also acknowledged the need to work for those who do not respond.
