#pku — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #pku, aggregated by home.social.
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New #openaccess publication #SciPost #Physics
Two-dimensional higher-order Weyl semimetals
Lizhou Liu, Qing-Feng Sun, Ying-Tao Zhang
SciPost Phys. 20, 115 (2026)
https://scipost.org/SciPostPhys.20.4.115 -
New #openaccess publication #SciPost #Physics
Nonpertubative many-body theory for the two-dimensional Hubbard model at low temperature: From weak to strong coupling regimes
Ruitao Xiao, Yingze Su, Junnian Xiong, Hui Li, Huaqing Huang, Dingping Li
SciPost Phys. 20, 101 (2026)
https://scipost.org/SciPostPhys.20.4.101 -
I've realised I haven't posted here in a while. Also, haven't posted about movies, books, or PKU.
PKU - my last result was 325umol/L, which is good news but a little higher! I did change the diet so that was kind of expected, was actually lower than expected 🤯
Movies: Watched Ready or Not 2: Here They Come. It was fine, kind of like TWKY but not quite so supernatural.
Books: How long have you got? 🤣
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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 -
RE: https://pkutalk.com/@soheb/116188606885004550
The results for this bloodspot was 227umol/L!
My weight lifting seems to be helping quite a bit with the bloodspots! Also, I've rounded down with my exchanges, which has helped quite a bit (I rarely ever hit 2 exchanges exactly).
I'm trying to cook my own food now to cut down on visceral fat that my weighing scales report back, so next results should be interesting...
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CW: Blood
Nailed it, as usual 😏
#Phenylketonuria #PKU #phenylceotnurie #pico #blood #health #nhs
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March PKU & Brain Health Update:
- Rare Disease Day equity report,
- PKU research, pancake recipes,
- brain injury app trials,
- and a book sale ending 7th March!
Share your story & support the community.https://www.pigpen.page/march-2026/
#pku #rarediseaseawareness #shareyourstory #phenylketonuria #braininjury
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CW: Blood
@soheb Is this really the latest thread we had? If so, that's probably my fault, I hadn't done one in a way too long time...
Well, I finally did it today. And it was looking really good after four circles. Maybe we should trade cards, you would have good use for five circles and I seem to hit the limit at four. 🤪
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To all PKU folks - Share your story!
@poconnor has got some great PKU stories on her blog - one from yours truly 🧐 - and you can add your story into the mix as well!
Visit this link to find out more: https://www.pigpen.page/share-your-story-2/
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Your Story Matters!
For Rare disease day, people with PKU are sharing their story.
👧 Clair discusses parenting with PKU, when your child does not have PKU - and the interesting challenges she has faced.
🍫 Ifan shares his experience navigating the manosphere, and what that meant for his PKU and mental health.
📦️ Soheb wrote a series of blogs for PigPen - looking at moving home with PKU, and getting into the gym.
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Good news, did a blood spot recently! Came back 226umol/L! 🥳🎉🎊
#phenylkeotnuria #PKU #Phenylcetobnurie #PKU #bloodtest #health #nhs
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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
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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
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New #openaccess publication #SciPost #Physics
Current-induced re-entrant superconductivity and extreme nonreciprocal superconducting diode effect in valley-polarized systems
Yu-Chen Zhuang, Qing-Feng Sun
SciPost Phys. 20, 021 (2026)
https://scipost.org/SciPostPhys.20.1.021 -
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
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RE: https://pkutalk.com/@soheb/115830394945307434
I've been so busy posting about movies and books, I forgot to post some news about my PKU!
This strange attempt at blood spot gave me a result of 277umol/L!
SCORE!
#pku #phenylketonuria #pcu #phenylcetonurie #health #healthcare #nhs
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CW: Blood
Look, I tried my best.
#blood #bloodtest #health #nhs #pku #pcu #phenylketonuria #phenylcetonurie #phenylalnine
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🎁 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
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It's been a while, but I've finished my Magnus Opus
#blood #bloodspot #bloodtest #nhs #health #pku #phenylketonuria #pcu #phenylcetonurie
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@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
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@poconnor has wrote a new newsletter about what she came away with at the NSPKU. It's exciting stuff!
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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!
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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
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Watched this by @phenylketonurianotebook very interesting (and my goblin brain appreciates the YT short):
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Autumn comfort food after a bruising workout?
Low-Protein Mac & Cheese :)
Yum!
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🎁 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
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🆕 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 travellingand 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… -
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
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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
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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.
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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
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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
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🧒 PKU Kids Books! 🖍️ Accessible, fun, low‑protein books for PKU kids
Specially crafted for children with PKU, these books weave education and entertainment.
The Low Phe ABC Book introduces protein‑free foods in bright illustrations, and the colouring companion invites playful learning—ideal for family engagement.“A wonderful resource” Prof. Anita MacDonald
#pku #pkukids #phenylketonuria #livingwithpku #pcu #lowproteinlife #lowphenylalanine #lowproteinliving #raresisease #books #kidsbooks
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Made this last night, but used 2 OXO cubes instead of the veg stock in the recipe, and OH WOW was it delicious!
www.vitafriendspku.co.uk/pku/recipe/vegetable-medley-pilau-rice
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Just released my new PKU books. An ABC reader and a colouring book 👏
- Designed especially for children with Phenylketonuria
- Full of foods which are considered protein-free for PKU in the UK,
- and have been checked by PKU clinicians.Let me know what you think, or grab your copy here:
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My latest blood test results was 676umol/L! (My last one was 950+ umol/L, so this is great news) 🥳
(I've only now realised I've completely forgot to provide blood spot samples as usual, but you know what to expect by now 😂)
#blood #bloodspot #pku #phenylketonuria #pcu #phenylcetonurie
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Low Protein Waldorf Salad recipe for PKU
An easy, & PKU-friendly Waldorf salad for a quick, healthy lunch. 1g protein / 1 phe in the UK. I use pine nuts for the protein as you get more 'nuts' per serving.
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Hi everyone. There is an online event with 4 speakers who have PKU, and one Mum! We are all sharing our PKU stories in creative ways (writing, film, stage...).
I hope you will join us! 23rd May @ 6pm London / 7pm Berlin
https://www.linkedin.com/events/rarecreatives-lives-storyteller7327788292572069888/theater/
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Inspiring interview on childbirth, #newbornscreening & my family's story just up - by the brilliant Dr. Kee Chan on her "What is Public Health" podcast. A deep dive on birth, DNA, genetics, #raredisease + my new book. Have a listen 🎧+ pls share! https://open.spotify.com/episode/0Z5vO7UkCdQPbB34clCgZZ #PKU #scicom
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Did my blood test but completely forgot to take pictures of the sheet.
Just imagine a complete disarray of blood spots. Meanwhile, you'll have to settle on my finger instead.
#blood #bloodtest #pku #phebylketonuria #pcu #phenylcetonurie
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📰 Monthly news, 🥗 low-protein recipes, and 🐶 dog photos all free to subscribers at PigPen.
Plus, you get a 🆓 copy of "Mental Health & PKU" when you sign up.
Join the conversation: https://www.pigpen.page/may-2025/
#PKU #Phenylketonuria #PCU #LowProtein #RareDisease #BrainInjury #Concussion #ABI #TBI #MentalHealth
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A new blog by @pcublogue which adequately explains the trouble of not managing the diet well with PKU
#pku #pcu #phenylketonuria #phenylcetonurie #health #healthcare #genetherapy
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PKU and being 'hangry'. Satiety (feeling full) can be a problem for those with PKU. Here are a few tips for those following a low-protein diet.
https://www.pigpen.page/pku-and-being-hangry/
#LivingWithPKU #PKU #PCU #Phenylketonuria #RareDisease #PKUFood #RareDiseaseAwareness #Hanger #Hungry
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April's update is PACKED with:
- 🐰 Easter tips,
- 🍰 ideas for school holiday baking,
- 📋 new brain injury research,
- 📝 and a chance to report on the NSPKU conference.
Sign up today and be the first to get #PKU [https://pkutalk.com/tags/PKU] news,
#low [https://pkutalk.com/tags/low]-protein recipes, mental heatlh tips in your
inbox!#LivingWithPKU [https://pkutalk.com/tags/LivingWithPKU] #PCU
[https://pkutalk.com/tags/PCU] #Phenylketonura
[https://pkutalk.com/tags/Phenylketonura] #PKUFood… -
April's update is PACKED with:
- 🐰 Easter tips,
- 🍰 ideas for school holiday baking,
- 📋 new brain injury research,
- 📝 and a chance to report on the NSPKU conference.
Sign up today and be the first to get #PKU news, #low-protein recipes, mental heatlh tips in your inbox!
#LivingWithPKU #PCU #Phenylketonura #PKUFood #RareDisease #BrainInjury #MentalHealth
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CW: Blood
Honestly, what did you expect?
#bloodtest #phenylketonuria #pku #phenylcetonurie #pcu #blood
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The fantastic @poconnor has released a new newsletter about the origins of PKU. You can read it here:
#pku #phenylketonuria #pcu #phenylcetonurie #health #nhs #birmingham #sheilajones #uk
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When you use up all your protein allowance on buttered popcorn…
#LivingWithPKU #pku #LowProtein #RareDisease #pcu #Phenylketonuria