home.social

#pku — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #pku, aggregated by home.social.

  1. 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

  2. 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

  3. 💛 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 👇
    pigpen.page/you-are-more-than-

    My thanks to Maddison for Sharing her Story
    #PKU #RareDisease #YouAreMoreThanYourPKU

  4. 💛 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 👇
    pigpen.page/you-are-more-than-

    My thanks to Maddison for Sharing her Story
    #PKU #RareDisease #YouAreMoreThanYourPKU

  5. RE: mastodon.online/@caoimhin/1121

    So two years later, the results of the study for the PKU home testing kit in which I participated has finally been published: 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 (phenyx.de/).

    #pku #phenyx

  6. 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)
    scipost.org/SciPostPhys.20.4.1

    #PKU #ZJU

  7. 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)
    scipost.org/SciPostPhys.20.4.1

    #PKU #ZJU

  8. 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

  9. 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

  10. 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

    pigpen.page/change-ambiguous-l

  11. 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

    pigpen.page/change-ambiguous-l

  12. RE: pkutalk.com/@soheb/11618860688

    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

  13. RE: pkutalk.com/@soheb/11618860688

    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

  14. 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.

    pigpen.page/march-2026/

    #pku #rarediseaseawareness #shareyourstory #phenylketonuria #braininjury

  15. 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.

    pigpen.page/march-2026/

    #pku #rarediseaseawareness #shareyourstory #phenylketonuria #braininjury

  16. 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. 🤪

    #pku

  17. 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. 🤪

    #pku

  18. 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: pigpen.page/share-your-story-2/

    #phenylketonuria #phenylcetonurie #pku #pcu #lowprotein

  19. 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: pigpen.page/share-your-story-2/

    #phenylketonuria #phenylcetonurie #pku #pcu #lowprotein

  20. 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.

    pigpen.page/share-your-story-2/

    #ShareYourStory #PKU #RareDiseaseDay #RareAware

  21. 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.

    pigpen.page/share-your-story-2/

    #ShareYourStory #PKU #RareDiseaseDay #RareAware

  22. 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.

    pigpen.page/share-your-story-2/

    #ShareYourStory #PKU #RareDiseaseDay #RareAware

  23. 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.

    pigpen.page/share-your-story-2/

    #ShareYourStory #PKU #RareDiseaseDay #RareAware

  24. 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.

    pigpen.page/pku-pancakes/

    #PKU #LivingwithPKU #LowProtein #LowProteinIdeas #Phenylketonuria #Pancakes

  25. 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.

    pigpen.page/pku-pancakes/

    #PKU #LivingwithPKU #LowProtein #LowProteinIdeas #Phenylketonuria #Pancakes

  26. 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)?

    pigpen.page/february-2026/

    #PKU #LivingwithPKU #Phenylketonuria #Palynziq #BrainHealth #BrainInjury #Stroke #NHS

  27. 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)?

    pigpen.page/february-2026/

    #PKU #LivingwithPKU #Phenylketonuria #Palynziq #BrainHealth #BrainInjury #Stroke #NHS

  28. 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)
    scipost.org/SciPostPhys.20.1.0

    #PKU #HeifeiLab
    #CPSF

  29. 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)
    scipost.org/SciPostPhys.20.1.0

    #PKU #HeifeiLab
    #CPSF

  30. 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)

    pigpen.page/what-is-palynziq/

    #PKU #LivingWithPKU #RareDiseaseCommunity #PatientInfo #Phenylketonuria

  31. 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)

    pigpen.page/what-is-palynziq/

    #PKU #LivingWithPKU #RareDiseaseCommunity #PatientInfo #Phenylketonuria

  32. RE: pkutalk.com/@soheb/11583039494

    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

  33. RE: pkutalk.com/@soheb/11583039494

    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

  34. 🎁 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

    pigpen.page/pku-at-christmas/

  35. @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