Newsletter
May 2026
A bumper bank holiday edition: May brings local elections in the UK, find out about ID’s & accessible voting. Plus, updates from the NSPKU conference, help with research.
Pauline
PKU
NSPKU England 2026 conference
Updates from the NSPKU 2026 conference: Future PKU treatments (sepipapterin, kidney treatments), Home Blood Phe Monitoring, and research updates on Phenylketonuria.
Newsletter
April 2026 news
April Update; Catch up on the PKU, Brain and mental health stories behind the turbulence of March. Plus, ideas to refresh PKU food.
Newsletter
46 March 2026
Rare Disease Day Reports, PKU GI research, Low Protein Pancake recipes, brain injury app trials, and a book sale ending 7th March!
Welcome, start here!
Welcome to PigPen — a space for lived experience, research, and storytelling around PKU, brain injury, and mental health.
ShareYourStory
Share Your Story
I believe that every story matters. If you’d like to share your experience — whether funny, heartfelt, or practical — on my blog, please get in touch
ShareYourStory
When the Parent Has PKU
The day my baby was born, as well as all the emotions that I felt on finally getting to meet my baby girl, I was so relieved that I had done it. All that hard work I put into my diet for over 2 years had been worth it, she was perfect!
ShareYourStory
PKU, Protein, and Pressure
I’ve never struggled too much with my diet... What has affected me is the mental state the diet puts me in. The constant weighing and measure of every option before me. The anxiety of it.
ShareYourStory
Share Your Story
Every story adds to our shared understanding of PKU. The post can be anonymous, we don’t have to share your name. Join our community and share your story today
ShareYourStory
Lived Experiences of Genomic Testing
Genomic testing isn’t just about science—it’s about people. This blog explores the emotional rollercoaster of the UK Sapropterin rollout and why patient voices matter.
Recipes
PKU Pancakes
An easy low protein recipe for reliable PKU pancakes: photos & video guides :) Ideas for protein-free, and measured protein toppings.
News
February 2026
A free workshop on Living with PKU; Genetic medicine, personalised treatments, and PKU; Campaigning for change in strokes and brain injury support; and What is the PKU injection (Palynziq)?