#phenylcetonurie — Public Fediverse posts

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.

#Phénylcétonurie #Phenylketonuria

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

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

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

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

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?

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

#Phenylketonuria #Phenylcetonurie

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

#phenylketonuria #phenylcetonurie

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

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.

#Phenylketonuria #Phenylcetonurie

Les fêtes s'en viennent vite et c'est pas toujours évident à gérer avec la phénylcétonurie. 😱
Cliquez le lien dans la bio, j'ai mis un article avec mes petits trucs perso pour que ça se passe bien et que ce soit moins compliqué. 🧘‍♂️

N'hésitez pas à partager vos propres trucs!

#Phénylcétonurie #ad

https://open.substack.com/pub/pcublogue/p/temps-des-fetes-et-phenylcetonurie

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

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

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 🤔 😅

#phenylketonuria #phenylcetonurie

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

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.

#Phenylketonuria #Phenylcetonurie

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

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

@poconnor has wrote a new newsletter about what she came away with at the NSPKU. It's exciting stuff!

https://www.pigpen.page/whats-in-the-treatment-pipeline/

#pku #phenylketonuria #pcu #phenylcetonurie

Watched this by @phenylketonurianotebook very interesting (and my goblin brain appreciates the YT short):

https://www.youtube.com/shorts/XB_33DDwDHg

#phenylketonuria #phenylcetonurie #pku #pcu

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. 😄
#phenylketonuria

https://www.phenylcetonurie.ca/p/mze782-un-nouvel-espoir-pour-la-pcu

New day, new breakfast. ☕️ 🥑 🔋

#phenylketonuria #phenylcetonurie

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.

#phenylcetonurie #phenylketonuria

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

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

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.

#phenylketonuria #pku #phenylcetonurie #pcu #lowprotein

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!

#phenylketonuria #phenylcetonurie

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

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

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

#pku #phenylketonuria #pcu #phenylcetonurie #food #cooking

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

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

A new blog by @pcublogue which adequately explains the trouble of not managing the diet well with PKU

https://www.phenylcetonurie.ca/p/phenylcetonurie-une-maladie-dadhesion?publication_id=3096512&post_id=161908964&isFreemail=true&r=4i1emi&triedRedirect=true

#pku #pcu #phenylketonuria #phenylcetonurie #health #healthcare #genetherapy

The fantastic @poconnor has released a new newsletter about the origins of PKU. You can read it here:

https://www.pigpen.page/origins-of-pku-treatment/?ref=pigpen-pku-brain-injury-mental-health-newsletter

#pku #phenylketonuria #pcu #phenylcetonurie #health #nhs #birmingham #sheilajones #uk

The fantastic @poconnor has released a new newsletter about the origins of PKU. You can read it here:

https://www.pigpen.page/origins-of-pku-treatment/?ref=pigpen-pku-brain-injury-mental-health-newsletter

#pku #phenylketonuria #pcu #phenylcetonurie #health #nhs #birmingham #sheilajones #uk

The fantastic @poconnor has released a new newsletter about the origins of PKU. You can read it here:

https://www.pigpen.page/origins-of-pku-treatment/?ref=pigpen-pku-brain-injury-mental-health-newsletter

#pku #phenylketonuria #pcu #phenylcetonurie #health #nhs #birmingham #sheilajones #uk

The fantastic @poconnor has released a new newsletter about the origins of PKU. You can read it here:

https://www.pigpen.page/origins-of-pku-treatment/?ref=pigpen-pku-brain-injury-mental-health-newsletter

#pku #phenylketonuria #pcu #phenylcetonurie #health #nhs #birmingham #sheilajones #uk

The fantastic @poconnor has released a new newsletter about the origins of PKU. You can read it here:

https://www.pigpen.page/origins-of-pku-treatment/?ref=pigpen-pku-brain-injury-mental-health-newsletter

#pku #phenylketonuria #pcu #phenylcetonurie #health #nhs #birmingham #sheilajones #uk

Our workplace has moved to a new location. It's lovely, but it's also equally frustrating to someone like me who has PKU.

#pku #phenylketonuria #pcu #phenylcetonurie

Article important sur mon blogue pour l’avenir de l’accès aux traitements pour la #phenylcetonurie au #Quebec. Merci à Marika et sa fille Gaïa d’avoir pris le temps d’en parler à la radio.
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Important article on my blog for the future of treatments access for #phenylketonuria in #Quebec. Thanks to Marika and her daughter Gaïa for taking the time to talk about it on the radio.

#Palynziq #PKUawareness

https://www.phenylcetonurie.ca/p/la-situation-du-palynziq-au-quebec?r=47am9s

Just saw Promin did a video making low protein Yorkshire puddings on my YouTube feed

Gotta give this a try!

https://youtu.be/go6iElX1Bpk

#pku phenylketonuria #pcu #phenylcetonurie #lowprotein #lowproteinfood

I'm back, folks 😎 #bloodspot #blood #health #pku #phenylketonuria #pcu #phenylcetonurie

Two of the greatest things in life.

#pasta #lowprotein #lowproteindiet #thinkpad #lenovothinkpad #spaghetti #phenylketonuria #pku #phenylcetonurie #pcu