It's been a while, but I've finished my Magnus Opus
#blood #bloodspot #bloodtest #nhs #health #pku #phenylketonuria #pcu #phenylcetonurie
#pku
@soheb Thank you, and thank you for the post yesterday :) I did see it and missed doing my own!
Yeah, it is difficult as I worry most about access. A few years back it became clear that the UK wouldn't get the injection.
Now that the UK isn't in the EU, Sepheince isn't a guarantee - particularly for adults.
Re the kidney drugs, None of the UK trials discussed were looking at adults!
I think we and the NSPKU have to gear up for campaigning again as access is going to be a key issue!
#PKU
🔬 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
@poconnor has wrote a new newsletter about what she came away with at the NSPKU. It's exciting stuff!
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!
Aviation weather for Sultan Syarif Kasim Ii (Simpang Tiga) airport in Pekanbaru-Sumatra Island area (Indonesia) is “WIBB 120200Z 33004KT 8000 SCT012 25/25 Q1011 NOSIG” : See what it means on https://www.bigorre.org/aero/meteo/wibb/en #pekanbarusumatraisland #indonesia #sultansyarifkasimiisimpangtigaairport #wibb #pku #metar #aviation #aviationweather #avgeek #airport vl
Watched this by @phenylketonurianotebook very interesting (and my goblin brain appreciates the YT short):
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…
🥗 Recipe ideas! Four quick ‘school-night’ dinners
Quick, easy dinners that satisfy both the PKU diet and your taste buds.Three recipes are Phe-free; the fourth has 2.5 g Phe per adult portion, with optional additions if you need more.
https://www.pigpen.page/four-quick-school-night-dinners/
#LivingWithPKU #BackToSchool #PKU #PKUFood #LowProtein #LowProteinIdeas
Catch up after the summer with curated news on PKU, brain injury, and mental health.
Monthly newsletters for subscribers.
🆓 to join, and
🎁 get the "Mental Health and PKU" ebook too!
https://www.pigpen.page/sept-2025/
#PKU #LivingWithPKU #PKULife #LivingWithMildBrainInjury #Concussion #MentalHealth
🆕 Tips for Managing Prescriptions and Travelling with #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!
New #openaccess publication #SciPost #Physics
Z2 topological orders in kagome dipolar systems: Feedback from Rydberg quantum simulator
Pengwei Zhao, Gang v. Chen
SciPost Phys. 19, 040 (2025)
https://scipost.org/SciPostPhys.19.2.040
Aviation weather for Sultan Syarif Kasim Ii (Simpang Tiga) airport in Pekanbaru-Sumatra Island area (Indonesia) is “WIBB 290430Z 16008KT 9999 SCT010 32/25 Q1008 NOSIG” : See what it means on https://www.bigorre.org/aero/meteo/wibb/en #pekanbarusumatraisland #indonesia #sultansyarifkasimiisimpangtigaairport #wibb #pku #metar #aviation #aviationweather #avgeek #airport vl
Just tried using the Mevalia rice and it's the one for me (an old photo of the rice with veggies).
For one I have freedom in cooking the rice (I cook it in water with vegetable stock cube mixed for added flavour). Another reason is I can taste each rice grain.
Third is that it ain't sticky when cooked (unless overcooking).
This is one of the rare PKU rice that doesn't taste like pasta but manages to be even better than normal rice lol.
Finally - an actual PKU post!
I got an email from Promin saying they've got this new low protein rice - rice which is pretty much "normal rice" but has gone through some process to make it only half an exchange.
As someone who loves rice, I'm going to give this a try later on!
You can buy the packet of rice online here: https://prominpku.com/product/echigo-low-protein-pre-cooked-rice/
#phenylketonuria #phenylcetonurie #pcu #pku #lowprotein #lowproteindiet
The brilliant @poconnor has shared a PKU friendly recipe - Fennel and Orange salad (with clearly detailed ingredients that have protein, so you know where to skip):
https://www.pigpen.page/fennel-and-orange-salad/
#pku #lowprotein #phenylketonuria #pcu #phenylcetonurie #food #recipes #lowproteinrecipes #diet #lowproteindiet
July news from PigPen is out now, with the latest on:
👏 #PKU news, including approval for a new treatment
👨⚕️ A Men's Health care strategy in the UK
🧠 Neuroplasticity in #BrainInjury recovery
🥗A #LowProtein 'no-cook' recipe to beat the heat
🏃♂️ An epic 372 mile run for #charity
PLUS! 📚 new #books for PKU kids, full of low-protein foods. 🍎
🆓 Free to subscribers (and subscribing is free!) 🥳
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