Getting ready for Valentine's Day - and Pancake Tuesday :)
An easy low protein recipe for reliable PKU pancakes: photos & video guides :)
Ideas for protein-free, and measured protein toppings.
https://www.pigpen.page/pku-pancakes/
#PKU #LivingwithPKU #LowProtein #LowProteinIdeas #Phenylketonuria #Pancakes
Monthly email on PKU, Brain, and Mental Health:
🆓 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)?
https://www.pigpen.page/february-2026/
#PKU #LivingwithPKU #Phenylketonuria #Palynziq #BrainHealth #BrainInjury #Stroke #NHS
What is Palynziq? And why does it have so many names?
PAL. PEG-PAL. Pegvaliase. Palynziq.
If you’ve ever felt confused by PKU treatment names — you’re not alone. They all describe the same enzyme-based treatment, just from different angles.
I’ve updated my blog to explain it in plain language:
💚 what the treatment is
💚 how it works
💚 where it’s available (and where it isn’t)
https://www.pigpen.page/what-is-palynziq/
#PKU #LivingWithPKU #RareDiseaseCommunity #PatientInfo #Phenylketonuria
PAL stands for Phenylalanine Ammonia Lyase, which is a common enzyme in many plant species. The name is similar to PAH because both of them break down phe.... This is why it has been developed as a treatment for people who can’t produce enough PAL — those of us with PKU.
🎁 Please share with patients, clinicians, and anyone who might be catering for someone on a Low-Protein diet this Christmas
💡 Tips and links to help with a low protein Christmas or Thanksgiving. I’ve included menu suggestions & recipes, but let’s start with making the festive season friendlier to those on restricted diets.
Merry Christmas 🎄
#PKU #LowProtein #LivingWithPKU #RareDiseas #MetabolicDisorder
🔬 The latest on PKU treatment from NSPKU's October conference - and what they might mean for those living with PKU.
💊 Sepiapterin (Sephience)
🧪 JNT-517, and MZE782
🩸 At-home phe monitors
🗓️ Published on PigPen.page (Want to be the first to see my posts? Subscribe for free emails.)
🔗 https://www.pigpen.page/whats-in-the-treatment-pipeline/
#PKU #Phenylketonuria #RareDisease #InheritedMetabolicDisorders #LivingWithPKU #NSPKU
A great NSPKU conference in Cardiff yesterday. Lovely to see so many new faces, a reminder to head out beyond the usual places.
Lots of updates, new products and research coming. Just organising my thoughts and will report in the blog soon!
Autumn comfort food after a bruising workout?
Low-Protein Mac & Cheese :)
Yum!
🎁 Free to subscribe! Plus, you get a gift ebook: "PKU & Mental Health"
📬 October's newsletter looks at the turmoil in the UK pharmaceutical industry, why this matters - and what you can do.
💚 PKU news: Support NSPKU in parliament, another promising treatment in development
🧠 Brain news: Do we have a sideline test for concussion at last?!
🥘 Plus: 4 Low-protein recipes to try out
#PKU #LivingWithPKU #RareDisease #Concussion #LivingWithMildBrainInjury #TBI #PKUFood
https://www.pigpen.page/oct-2025/
A great start to the week!
The latest issue of the NSPKU News & Views popped through the door first thing.
#LivingwithPKU #PKUcommunity #PKULife #Phenylketonuria, #PKU
🆕 Tips for Managing Prescriptions and Travelling with #PKU
[https://pkutalk.com/tags/PKU]
Earlier this summer I had a great conversation with Tom and Jasmine for this new
podcast by the NSPKU.
It was full of tips for:
- dealing with GPs
- packing for PKU,
- managing protein while travelling
and just talking about how we manage our PKU "Home & Away"
Would like to know what you think of it!
#LivingWithPKU [https://pkutalk.com/tags/LivingWithPKU] #TravellingWithPKU
[https://pkutalk.com/tags/T…
poconnor
