mastodon 4.7.3Author & Advocate 🐷🖋️
#PKU #BrainInjury #MentalHealth
Books
#LivingWithPKU
#LowPheABC
#TheRedHatStories
#LivingWithMildBrainInjury
Dog: 🐾 #FluffMuppet the Keeshond
Dog? Or the rare fluff hippo?
Many thanks to Beacon for hosting a blog for PKU Day. One of the most powerful tools in advocacy is story telling!
I urged us all to remember that "Patient voices are not just anecdotes. They're the lived experience that can shape research, improve care, and drive policy change."
Read more here: https://www.rarebeacon.org/blog/beyond-the-clinic-navigating-adulthood-with-pku/
Tomorrow my guest post goes live on @RareBeacon for #PKUDay. I talk about Navigating Adulthood with PKU, and why community voices matter.
#PKU, #PKUDay, #RareDisease, #Phenylketonuria #LivingWithPKU
💛 You are more than your PKU.
🌱 Maddison, 27, drifted from the PKU diet as a teen — the pressure of being "different" got too much. Now she's working her way back to it while juggling full-time work and college.
Her message: "Keep trying and keep advocating for yourself! You can do it and always ask for support when you need it."
Quick read — her full story here 👇
https://www.pigpen.page/you-are-more-than-your-pku/
My thanks to Maddison for Sharing her Story
#PKU #RareDisease #YouAreMoreThanYourPKU
🎁 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
Had a great time out with the #FluffMuppet last weekend. My thanks to Kate P for the great photos!
Navigating Life's Challenges.
Change is a constant in life. Whether it’s a global event, a personal health journey, or an unexpected disruption, we are often forced to adapt to new realities
Explore how spoon theory and ambiguous loss shape our willpower and resilience. Learn to navigate change, chronic illness, and daily energy limits with practical insights.
#SpoonTheory #MentalHealth #Resilience #PKU #BrainInjury
March PKU & Brain Health Update:
https://www.pigpen.page/march-2026/
#pku #rarediseaseawareness #shareyourstory #phenylketonuria #braininjury
🎉 400 copies sold! 🎉
Today Living with PKU reached an incredible milestone — 400 copies sold!
I wanted to share real stories and
practical insights that could help others living with rare conditions feel seen and supported.
Knowing this book has reached so many people around the world means the world to me 💙
Thank you to everyone who’s read, shared, reviewed, or gifted a copy — your support helps raise awareness!
📚 If you haven’t read it yet, link in the bio
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/
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
Sometimes anxiety isn’t something to fix — it’s something to pause.
When we’re overwhelmed, the spiral of what went wrong can make everything heavier. This post explores how self-compassion and a simple mindfulness framework (RAIN) can help slow the cycle and create breathing space.
You don’t have to stop anxiety to take care of yourself.
Pausing is enough. 🌱
🔗 https://www.pigpen.page/pausing-the-anxiety-cycle/
#MentalHealth #AnxietySupport #SelfCompassion #Mindfulness #raintechnique
The PigPen November newsletter is out, featuring the latest on:
🩻 AI and a golden age of medicine
💊 Updates in UK pharma
🧠 New neurological rehab guidelines
❗ And the latest in PKU treatments
Sign up for free to get this news first 👇
https://www.pigpen.page/nov-2025/
🔬 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
My book Living with Mild Brain Injury is now 20% off! 🎉
It shares the lived experience of post-concussion recovery — the invisible parts, the slow healing, and the small wins that matter.
Find the discount link here 👉 https://www.pigpen.page/20-off-for-readers
Christmas present ideas 😆
A small selection of the bling on show at #Cartier at the V&A. The snake is an articulated necklace with a sinuous movement - absolutely amazing!
