October 2026
October is a massive month in the PKU world, with EU and UK conferences. Meanwhile, I'm heading to Japan! Plus audiobook, 'fish' fingers & more
Latest
Change and neuroplasticity
Why your brain is built for change, and what that means after trauma.
September 2026
A new supplement, a PKU mental health course, conference dates for autumn… Plus! Help with a new routine, and 4 recipes for school night dinners.
August 2026
From PKU surveys to brain injury tips and recovery, including Low Protein summer salads and a book sale - here is your August roundup of what matters in the rare disease and brain injury communities
July 2026
I'm excited to introduce my new YouTube video series and share some book chapter excerpts with you all. But first, let's catch up on the latest PKU and brain injury news.
PKU Day 2026
Hullo there, The 28th of June is International PKU Day: a chance for the Low Protein community to raise awareness of Phenylketonuria and allied inherited metabolic conditions, like Tyrosinaemia. To mark it, I am launching my YouTube channel: youtube.com/@PaulineAuthor It is a space for practical Low Protein recipes,
Heatwaves & Brain Injury
A brain injury can sometimes cause problems with temperature regulation, making it harder for survivors to control their body temperature.
June 2026
June 2026 roundup: PKU news, menstruation study, rare disease advances, brain injury AMA with Dr Putrino, plus PigPen recipes & stories
YouTube soft launch
My first YouTube video! And your feedback would mean the world to me. This is brand-new territory for me, and I want to get it right.
You are more than your PKU!
Maddison shares 'One piece of advice I’ve always had is don’t let PKU define YOU as a person. You are more than your PKU!'
Tips for PKU and non-PKU pasta
I once knew a Frenchman who insisted that pasta cooked without salt and oil was an abomination. I tried it, and can confirm that both PKU and non-PKU pasta benefit
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.
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)?
PKU
What is Palynziq?
Also known as Pegvaliase, or PAL, or PEG-PAL. PAL stands for Phenylalanine Ammonia Lyase, which is a plant enzyme with breaks down phe. This is why it has been developed as a treatment for those of us with PKU.