#pku — Public Fediverse posts

Now is your best chance to find my *entire* ebook collection FREE or 50% off @Smashwords!

You can find all my books at https://www.smashwords.com/profile/view/PaulineO%27Connor

#SWSale2026 #Smashwords #PKU #LivingWithPKU #RedHatStories #RareDisease #LowProtein

Now is your best chance to find my *entire* ebook collection FREE or 50% off @Smashwords!

You can find all my books at https://www.smashwords.com/profile/view/PaulineO%27Connor

#SWSale2026 #Smashwords #PKU #LivingWithPKU #RedHatStories #RareDisease #LowProtein

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

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

💛 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

https://www.europesays.com/hu/76587/ Rókatánc, musicalkoncert, sétahétvége és a pesti tőzsde világa – Programajánló #A38Hajó #AnnaAndTheBarbies #boggie #BTMVármúzeum #budapest #BudapestKongresszusiKözpont #CsemerBoglárka #EurópaKiadó #HagyományokHáza #HU #Hungarian #Hungary #kiállítás #lemezbemutató #Magyar #MagyarZeneHáza #Magyarország #MenyhártJenő #MNMKKMagyarKereskedelmiésVendéglátóipariMúzeum #MNMKKPIMKassákMúzeum #musical #PaárJulcsi #PKÜ #program #VárosiSéta

RE: https://mastodon.online/@caoimhin/112174121072642405

So two years later, the results of the study for the PKU home testing kit in which I participated has finally been published: https://doi.org/10.1002/jimd.70187

While they try to frame things positively in the paper, looking at the numbers it seems to me that it's just a little too unreliable. My understanding is also that without some investor, they won't be able to productise it anyway.

For now it seems they are focussing on other parts of the phenyx app (https://phenyx.de/).

#pku #phenyx

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

#HebeiNormalUniversity #PKU #HeifeiLab
#NSFHebei

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

#HebeiNormalUniversity #PKU #HeifeiLab
#NSFHebei

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

#PKU #ZJU

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

#PKU #ZJU

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? 🤣

#movies #pku #phenylketonuria #pcu #phenylcetonurie

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? 🤣

#movies #pku #phenylketonuria #pcu #phenylcetonurie

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

https://www.pigpen.page/change-ambiguous-loss-and-spoons/

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

https://www.pigpen.page/change-ambiguous-loss-and-spoons/

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...

#phenylketonuria #phenylcetonurie #pku #pcu

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...

#phenylketonuria #phenylcetonurie #pku #pcu

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

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

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/

#phenylketonuria #phenylcetonurie #pku #pcu #lowprotein

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/

#phenylketonuria #phenylcetonurie #pku #pcu #lowprotein

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.

https://www.pigpen.page/share-your-story-2/

#ShareYourStory #PKU #RareDiseaseDay #RareAware

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.

https://www.pigpen.page/share-your-story-2/

#ShareYourStory #PKU #RareDiseaseDay #RareAware

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.

https://www.pigpen.page/share-your-story-2/

#ShareYourStory #PKU #RareDiseaseDay #RareAware

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.

https://www.pigpen.page/share-your-story-2/

#ShareYourStory #PKU #RareDiseaseDay #RareAware

Good news, did a blood spot recently! Came back 226umol/L! 🥳🎉🎊

#phenylkeotnuria #PKU #Phenylcetobnurie #PKU #bloodtest #health #nhs

Good news, did a blood spot recently! Came back 226umol/L! 🥳🎉🎊

#phenylkeotnuria #PKU #Phenylcetobnurie #PKU #bloodtest #health #nhs

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

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

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

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

#PKU #HeifeiLab
#CPSF

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

#PKU #HeifeiLab
#CPSF

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

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

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

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

🎁 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

https://www.pigpen.page/pku-at-christmas/

It's been a while, but I've finished my Magnus Opus

#blood #bloodspot #bloodtest #nhs #health #pku #phenylketonuria #pcu #phenylcetonurie

It's been a while, but I've finished my Magnus Opus

#blood #bloodspot #bloodtest #nhs #health #pku #phenylketonuria #pcu #phenylcetonurie

@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