Sapropterin trial, part 3: the trial
The blood spots from my first week on the pills seemed to show a drop. I admit that I began to get excited. That was a mistake, and one I’d encourage others to avoid.
Pauline O'Connor
Polly is the editor of PigPen.Page. She set up this website to write about her personal experiences with brain injuries, PKU and to document her forays into the world of writing.
Sapropterin trial, part 2: Baseline testing
Maintaining this level of control would be a tough ask. But I discovered that, when I thought I had been strict on my diet in the past, I really hadn’t.
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.
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)