PKU news May 2024
Looking for a massive online resource with recipe & product ideas, managing PKU and fitness, and honesty about living with PKU? Check out Tristan’s blog...
PKU
About PKU (Phenylketonuria) and low protein diets
Starting the Conversation
We wanted a space where adults with PKU felt able to hold an open discussion about managing PKU, and to collect data about our concerns in real time.
Emergency travel with PKU
People with PKU need to prepare for the unexpected, here are my tips for travel. What are yours?
What is LNAA?
Large Neutral Amino Acid (LNAA) treatment for PKU
This is a supplementary therapy for PKU which is in use in some European countries. It is particularly aimed at those with mild PKU
Tips for blood spots
TW: discusses blood and needles.
Not all lancets are equal! While no blood collection method is fun or painless, the type of lancet used does have a significant effect on pain and healing.
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.
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!