pcublogue, to mastodon French
@pcublogue@pkutalk.com avatar

Did you know that you can connect your #Mastodon instance (in this case, PKU Talk) to @Flipboard ?
It’s a great visual way to check out content and interact with users.

#Feditips #MastodonTips #Phenylketonuria #Phenylcetonurie

https://videos.pkutalk.com/w/oEdx2QGnrRv4QetoUi1DMG

pcublogue, to random
@pcublogue@pkutalk.com avatar

We have new friends on PKU Talk, it’s amazing! 🙌🏼

Interesting reading for new comers.

#phenylketonuria #pku #phenylcetonurie

https://phenylcetonurie.com/2023/01/27/phenylketonuria-lands-on-mastodon/

pcublogue, to random French
@pcublogue@pkutalk.com avatar

Perfect shaker for a #PKU formula 🙌✌

No ball or grid, the twisted shape shakes the water and the powder. #Helimix #phenylketonuria

pcublogue, to random
@pcublogue@pkutalk.com avatar

The article "Clear the fog" that I spoke to Jonathan Pratt from the Regroupement québécois des maladies orphelines during our webinar.

The article unlocks by subscribing to the blog for free, which is the best way to combat the social media algorithm and ensure you're seeing my content. 😁

https://phenylcetonurie.com/2017/10/16/dissiper-le-brouillard/#googtrans(fr|en)

pcublogue, to random French
@pcublogue@pkutalk.com avatar

Coming tomorrow at 8:00 am ET on #PKUTalk, an article on willpower.

#phenylketonuria #phenylcetonurie #PKU

pcublogue, to random
@pcublogue@pkutalk.com avatar

Short night, it affects recovery and training. It is important to listen carefully to your body, set limits and promote recovery. It's good physically and psychologically. (After all, we must also navigate through other personal and professional responsibilities.) Take care of yourself!

#phenylcetonurie #phenylketonuria #pku

pcublogue, to random French
@pcublogue@pkutalk.com avatar

Beau début de journée. ☀️
📌 6000 pas jusqu’à maintenant
📌 Musculation
📌 Jeûne de 14 heures
📌 40g de protéines de formules pour briser le jeûne

Tout ça avant 11:00!

Motivation, motivation 😛💪🏻

#phenylcetonurie #pku #pkustrong #pkuawareness #phenylketonuria #lowprotein

pcublogue, to Health
@pcublogue@pkutalk.com avatar

It’s important to not overeat and looking at calories is a way to achieve that.

But when I take a look at the total amount of calories of just the PKU formulas, it’s a meal. (550 calories). 😒

The only way I found dealing with that is intermittent fasting (time restricted window), eating only 2 meals of food and carefully spread formulas during the day.

#Health #phenylketonuria #phenylcetonurie #pku #LivingWithPKU

pcublogue, to random French
@pcublogue@pkutalk.com avatar

An excellent recipe for Phenylade GMP ULTRA, vanilla-flavoured!

Super recette pour le Phenylade GMP ULTRA à la vanille!

#phenylcetonurie #phenylketonuria #PKU #PKUformula

https://youtube.com/shorts/O_C-rFpMaX4?si=yz5nN6XSzApZxf3T

poconnor, to random
@poconnor@pkutalk.com avatar

Update on future #treatments for #PKU

From the NSPKU conference held May 2024 here are my notes from the sessions on #sepiapterin, #mRNA, #gene #therapy, solute carrier 6, and oral options for #PegPal / #Palynziq

https://buff.ly/4awqcJP

#LivingWithPKU #RareDisease #phenylketonuria #PCU

pcublogue, to random French
@pcublogue@pkutalk.com avatar

Petit rappel : Cette recette est délicieuse! 😋 Partagez-là!
Abonnez-vous à mon blogue pour voir d'autres recettes sur #PhenylcetonuriePointCa ! 😎

#Phenylcetonurie #Phenylketonuria #PKU

Reminder: This recipe is delicious! 😋 Share it!
Subscribe to my blog on #PhenylketonuriaDotCa to see more recipes! 😎

https://videos.pkutalk.com/w/iu55BdNGQANCwoFe2nu9Hg

pcublogue, to random French
@pcublogue@pkutalk.com avatar

Bleuets 🫐
Bananes 🍌
Avocats 🥑
Lait d’amande
Sirop d’érable
20g de protéines de formule
Une bonne façon de commencer la journée
😋 💪🏻👌🏻
*
Blueberries 🫐
Bananas 🍌
Avocado 🥑
Almond milk
Maple syrup
20g of formula protein
A good way to start the day
😋 💪🏻👌🏻

#phenylcetonurie #pku #pkustrong #pkuawareness #phenylketonuria #lowprotein #globalhealth #santéglobale

pcublogue, to random French
@pcublogue@pkutalk.com avatar

Awesome vegetarian sauce. 😋🙌

pcublogue, to random French
@pcublogue@pkutalk.com avatar

Sharing my thoughts about willpower and after watching a very interesting podcast about nutrition and health.

http://phenylcetonurie.ca/2024/04/15/dont-rely-on-willpower/

pcublogue, to Health
@pcublogue@pkutalk.com avatar

It’s honestly the easiest way possible to deal with a high glucose meal. Just walk.

#phenylcetonurie #phenylketonuria #health #globalhealth

video/mp4

pcublogue, to random French
@pcublogue@pkutalk.com avatar

Coming very soon to all my platforms (including Peertube and PKUTalk): A PKU formula recipe with Matcha Green Tea! 🤩

À venir très bientôt sur toutes mes plateformes (incluant Peertube et PKUTalk) : Une recette de formule PCU avec du thé vert Matcha! 🤩

#Phénylcétonurie #Phenylketonuria #PKU

pcublogue, to random
@pcublogue@pkutalk.com avatar

Dinner this evening: Vegetables overload and sweet potatoes 🍠

#phenylcetonurie #pku #pkustrong #pkuawareness #phenylketonuria #lowprotein

pcublogue, to aitools French
@pcublogue@pkutalk.com avatar

#Ad | Do not search anymore. This is THE recipe book you need. Guess what is the special ingredient in all the recipes. 😉

#Phenylketonuria #PKU

http://phenylcetonurie.com/2024/03/12/incredible-recipes-with-a-secret-ingredient-to-boost-your-meals/

pcublogue, to random French
@pcublogue@pkutalk.com avatar

En ce 29 février 2024, on célèbre la . 😁
Comme j'ai une maladie rare appelée phénylcétonurie (PCU, PKU en anglais), je ne peux manger que 10g de protéines naturelles au maximum (moins, c'est encore mieux) car mon corps ne peut traiter un acide aminé spécifique, la phénylalanine.

pcublogue, to random
@pcublogue@pkutalk.com avatar

Ok, I finally did it 🙌🏼

I found the perfect structure for my blog to separate clearly French and English content.

Out of the 4 recommendations from Wordpress, it wasn’t any of them lol
It’s my own structure and it works well.

French: phenylcetonurie.com

English: phenylcetonurie.com/en

#phenylketonuria #phenylcetonurie #pku

pcublogue, to random French
@pcublogue@pkutalk.com avatar
pcublogue, to random
@pcublogue@pkutalk.com avatar

I’ve been encouraging people to subscribe to my blog a lot lately rather than counting on social media algorithms to see my content. I strongly felt like I had to “walk the talk” and improve the user experience.

So, I spent a good part of my vacation re-thinking the structure and working on it.

Here’s what changed.

#phenylketonuria #phenylcetonurie #pku

pcublogue, to random French
@pcublogue@pkutalk.com avatar

Discussion au sujet du patient-partenaire.
📌 Qu'est-ce que c'est?
📌 Comment en devenir un?

No subtitles on the YouTube video. English subtitles available automatically if your Facebook profile is set in English here: https://fb.watch/qr6gcE5-_2/

#Phénylcétonurie #Phenylketonuria #PKU #AfficheTonZèbre #ShowYourZebra #MaladiesRares #RareDiseases

https://www.youtube.com/watch?v=EHPvtZvCmu4

pcublogue, to random French
@pcublogue@pkutalk.com avatar
pcublogue, to random French
@pcublogue@pkutalk.com avatar

Bon matin!
Une donnée extrêmement importante pour nous tous.

"Selon le rapport Meta's Widely Viewed Content, 95,2% des vues aux États-Unis au cours du quatrième trimestre de 2023 n'incluaient pas de lien vers une source extérieure à Facebook."

C'est exactement pour ça que je publie de moins en moins de lien vers mon blogue, vous ne les verriez pas de toute manière. Et c'est aussi pour ça que je vous encourage à vous abonnez directement au blogue. 😁

#phenylcetonurie #phenylkeotnuria

pcublogue,
@pcublogue@pkutalk.com avatar

Dans deux jours, c'est le mois de la sensibilisation à la phénylcétonurie qui commence. Ne comptez pas sur Facebook ou Instagram, abonnez-vous directement et passez le message! 💙

#Phénylcétonurie #Phenylketonuria #PKU

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