#phenylketonuria — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #phenylketonuria, aggregated by home.social.
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CW: Blood
Done my months blood spots
#blood #bloodtest #pku #phenylketonuria #pcu #phenylcetonurie
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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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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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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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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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@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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Moi qui essaie désespérément de créer des craquelins faibles en protéines ET faibles en glucides net 😅😭
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Me desperately trying to create crackers low in protein AND low in net carbohydrates 😅😭 -
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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28th June and I’m thinking today of the massive advances made in the treatment of PKU in Ireland over the last 50+ years. But I’m also thinking of those parts of the world where people are unable to access proper treatment and without automatic screening at birth.
#ipkuday2025 #PKU #phenylketonuria