#phenylketonuria — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #phenylketonuria, aggregated by home.social.
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50g en équivalent de protéines, faible en glucides, goût chocolat caramel. C'est ma fondation pour la journée. Nouvel article sur le blogue avec la recette et la science derrière tout ça.
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50g of protein equivalent, low carbs, chocolate caramel flavor. It's my foundation for the day. New article on the blog with the recipe and the science behind it. -
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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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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Nouveaux traitements prometteurs pour la #phénylcétonurie!
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Promising new treatments for #phenylketonuria!https://open.substack.com/pub/pcublogue/p/deux-nouvelles-qui-donnent-de-lespoir
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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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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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Je commence à m'intéresser à un aspect hors du commun que je trouve pertinent avec la #phénylcétonurie : la tentation.
Ça vous intéresserait une vidéo sur le sujet?
I'm starting to take an interest in an unusual aspect that I find relevant to #phenylketonuria: temptation.
Would you be interested in a video on the subject?
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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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New treatment, new hope.
But it is at a very early stage.👉 https://open.substack.com/pub/pcublogue/p/un-nouveau-signal-du-cote-de-la-recherche
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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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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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Wondering if Egoo Phe is accurate? There's a new study about that!
https://open.substack.com/pub/pcublogue/p/egoo-phe-de-nouvelles-donnees-qui
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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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Joyeuses fêtes à tous! Merci beaucoup de me suivre depuis toutes ces années. Abonnez-vous à mon blogue pour vous assurer de ne rien manquer.
https://www.phenylcetonurie.ca/
Happy holidays to everyone! Thank you so much for following me all these years. Subscribe to my blog to make sure you don't miss anything.
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The holidays are fast approaching, and it's not always easy to manage with phenylketonuria. 😱
Click the link in bio where I've posted an article with my personal tips to help make things go smoothly and be less complicated. 🧘♂️Feel free to share your own tips!
https://open.substack.com/pub/pcublogue/p/temps-des-fetes-et-phenylcetonurie
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Quand t'as loué un chalet avec tes amis mais qu'il y a une panne de courant depuis le début, il faut que tu sois créatif 😅❄ #phenylcetonurie #phenylketonuria
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One of the most important articles I wrote: The 5 reasons why Sephience can change our lives.
L'un des articles les plus importants que j'ai écrits : Les 5 raisons pour lesquelles Sephience peut changer nos vies. Ajoutez celui-là à vos signets.
#phénylcétonurie #phenylketonuria
https://open.substack.com/pub/pcublogue/p/sephience-5-raisons-indeniables-pourquoi
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The face I do when I start to wonder if I did enough to encourage the community to take CanPKU's survey 🤔 😅
La tête que je fais quand je commence à me demander si j'en ai fait assez pour encourager la communauté à participer au sondage de CanPCU 🤔 😅
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Another great PKU story which demonstrates that access to a treatment for #phenylketonuria is important.
Une autre histoire formidable sur la PCU qui démontre l'importance de l'accès à un traitement pour la #phénylcétonurie.
https://www.phenylcetonurie.ca/p/a-pku-story-phenylketonuria-treatment
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Great hike on Mont St-Hilaire today! Health metrics tracked with RingConn.
After a carb‑rich PKU‑friendly meal, a short walk timed around the blood‑glucose peak (≈ 45 min after eating) blunts the insulin surge and supports insulin sensitivity.
👉 Our PKU diet is naturally high in carbs, so pairing meals with a quick hike or stroll isn’t just “for digestion”, it’s a smart strategy to keep insulin spikes in check and protect long‑term metabolic health.
#Phenylketonuria #Phenylcetonurie -
I am very interested in hearing your opinion on the subject.
Je suis très intéressé de connaître votre opinion sur le sujet. -
Living with #phenylketonuria affects our quality of life. We need Sephience treatment from PTC Therapeutics to improve it, and our overall health. Here is a first testimonial that was sent to me - don't hesitate to send one to me too if you wish to contribute to this awareness effort.
https://www.phenylcetonurie.ca/p/une-histoire-de-pcu-nathan-et-la
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I know a few folks in the #phenylketonuria community have played around with the egoo health pku bloodspot monitoring device, and I was wondering how you found it? Was it accurate? Easy to use? Would you recommend it?
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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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🔬 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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Watched this by @phenylketonurianotebook very interesting (and my goblin brain appreciates the YT short):
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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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Un comprimé oral qui pourrait transformer la gestion de la phénylcétonurie? Découvrez les résultats prometteurs de MZE782 dans ce nouvel article. 😄
#phénylcétonurie
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An oral tablet that could transform the management of phenylketonuria? Discover the promising results of MZE782 in this new article. 😄
#phenylketonuriahttps://www.phenylcetonurie.ca/p/mze782-un-nouvel-espoir-pour-la-pcu
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New day, new breakfast. ☕️ 🥑 🔋
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Turns out my next video won't be about carbohydrates. I have a cool thing to share about my last 24-hour fasting experiment.
Il s'avère que ma prochaine vidéo ne portera pas sur les glucides. J'ai quelque chose de très cool à partager sur ma dernière expérience de jeûne de 24 heures.
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Course ✅
Prochaine vidéo : truc perso pour diminuer les dommages d'un repas riche en glucides avec la #phénylcétonurie.
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Running ✅
Next video: personal tip to reduce the damage of a meal rich in carbohydrates with #phenylketonuria. -
The problem with fasting when you have #phenylketonuria...
Full video on my blog.
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Le problème avec le jeûne quand on a la #phénylcétonurie...
Vidéo complète sur mon blogue. -
Big news from the FDA: Sephience is approved for #phenylketonuria.
Grande nouvelle de la FDA : Sephience est approuvé pour #phénylcétonurie.
https://open.substack.com/pub/pcublogue/p/sephience-approuve-aux-etats-unis
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It is what it is.
The studies don't lie. Another perspective on the situation with Palynziq in Quebec.
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C'est comme ça.
Les études ne mentent pas. Un autre point de vue sur la situation du Palynziq au Québec.#Phénylcétonurie #Phenylketonuria
https://www.phenylcetonurie.ca/p/palynziq-et-cognition-ce-quon-oublie
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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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It's not the results of my latest 24 hours fasting experiment... but it was a very important hormonal lesson!
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Ce ne sont pas les résultats de ma dernière expérience de jeûne de 24 heures... mais c'était une leçon hormonale très importante! -
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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The registration for the E.S.PKU conference 2025 in Hamburg is open! Who else is planning to go? (@soheb or @poconnor maybe?)
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I wish more people knew about the use of food restrictions as a medical treatment.
Many see the word 'diet' or food restrictions as a lifestyle choice, to be ignored or dismissed.
In truth, many medical conditions are treated through the use of food restrictions.
You never know what someone else is dealing with, but you can choose how you react to their requests.
What do you wish people knew more about?
#LowProtein #PKU #Phenylketonuria #RareDisease #MetabolicDisorder #LivingwithPKU
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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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Just emailed to PigPen Subscribers. It is free to join, and you get a free book!
https://www.pigpen.page/june-2025/
📣 News and views from the world of rare disease. This month:
➡️ exciting news on future rare disease treatments;
➡️ a look at the revision of the ESPKU Guidelines on PKU (plus, a primer on what they are!)
➡️ Recipe of the month: Low-Protein Waldorf salad🎭 Catch up on our LinkedIn Live! And much more
#pku #Phenylketonuria #raredisease #lowprotein #BrainHealth #braininjuryawareness
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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/