#pkuawareness — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #pkuawareness, aggregated by home.social.
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Fun chatting with this inspiring creative panel for "Rare Creatives' Lives: Storytellers on Rare Disease in the Arts" - now up on Youtube here 🎧 : https://www.youtube.com/watch?v=miuzmwNEGHs #Health #PKUAwareness #PKU #RareDIsease #Bookstodon Have a look and share with a friend to spark your art🎨 ... and maybe even activism!🔥
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Fun chatting with this inspiring creative panel for "Rare Creatives' Lives: Storytellers on Rare Disease in the Arts" - now up on Youtube here 🎧 : https://www.youtube.com/watch?v=miuzmwNEGHs #Health #PKUAwareness #PKU #RareDIsease #Bookstodon Have a look and share with a friend to spark your art🎨 ... and maybe even activism!🔥
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Fun chatting with this inspiring creative panel for "Rare Creatives' Lives: Storytellers on Rare Disease in the Arts" - now up on Youtube here 🎧 : https://www.youtube.com/watch?v=miuzmwNEGHs #Health #PKUAwareness #PKU #RareDIsease #Bookstodon Have a look and share with a friend to spark your art🎨 ... and maybe even activism!🔥
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🎧 Eugenics. 🙏 Ethics. ♥️ Empathy. What actual lived experiences of families with rare health conditions teach healthcare providers + writers. Interview by #scicom expert Dr. Alexandra Howson 🎧 up today! Please share -> https://www.writemedicine.com/from-diagnosis-to-advocacy-what-rare-disease-teaches-us-about-cme/ #RareDisease #PKUAwareness #CME #eugenics
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🎧 Eugenics. 🙏 Ethics. ♥️ Empathy. What actual lived experiences of families with rare health conditions teach healthcare providers + writers. Interview by #scicom expert Dr. Alexandra Howson 🎧 up today! Please share -> https://www.writemedicine.com/from-diagnosis-to-advocacy-what-rare-disease-teaches-us-about-cme/ #RareDisease #PKUAwareness #CME #eugenics
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🎧 Eugenics. 🙏 Ethics. ♥️ Empathy. What actual lived experiences of families with rare health conditions teach healthcare providers + writers. Interview by #scicom expert Dr. Alexandra Howson 🎧 up today! Please share -> https://www.writemedicine.com/from-diagnosis-to-advocacy-what-rare-disease-teaches-us-about-cme/ #RareDisease #PKUAwareness #CME #eugenics
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Event Invite: Rare Creatives’ Lives: Storytellers on Rare Disease In the Arts! This virtual roundtable is coming May 23, 1PM ET on LinkedIn Live, celebrating #PKUAwareness Month. You're invited to listen in and share! Producers, filmmakers + writers who have phenylketonuria talk about their creative process. See you there I hope! https://www.linkedin.com/events/rarecreatives-lives-storyteller7327788292572069888/about/ With @poconnor Pauline O'Connor, Kevin Alexander, Kurt Sensenbrenner, Lillian Isabella and me.
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Event Invite: Rare Creatives’ Lives: Storytellers on Rare Disease In the Arts! This virtual roundtable is coming May 23, 1PM ET on LinkedIn Live, celebrating #PKUAwareness Month. You're invited to listen in and share! Producers, filmmakers + writers who have phenylketonuria talk about their creative process. See you there I hope! https://www.linkedin.com/events/rarecreatives-lives-storyteller7327788292572069888/about/ With @poconnor Pauline O'Connor, Kevin Alexander, Kurt Sensenbrenner, Lillian Isabella and me.
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Event Invite: Rare Creatives’ Lives: Storytellers on Rare Disease In the Arts! This virtual roundtable is coming May 23, 1PM ET on LinkedIn Live, celebrating #PKUAwareness Month. You're invited to listen in and share! Producers, filmmakers + writers who have phenylketonuria talk about their creative process. See you there I hope! https://www.linkedin.com/events/rarecreatives-lives-storyteller7327788292572069888/about/ With @poconnor Pauline O'Connor, Kevin Alexander, Kurt Sensenbrenner, Lillian Isabella and me.
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Event Invite: Rare Creatives’ Lives: Storytellers on Rare Disease In the Arts! This virtual roundtable is coming May 23, 1PM ET on LinkedIn Live, celebrating #PKUAwareness Month. You're invited to listen in and share! Producers, filmmakers + writers who have phenylketonuria talk about their creative process. See you there I hope! https://www.linkedin.com/events/rarecreatives-lives-storyteller7327788292572069888/about/ With @poconnor Pauline O'Connor, Kevin Alexander, Kurt Sensenbrenner, Lillian Isabella and me.
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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.https://www.phenylcetonurie.ca/p/la-situation-du-palynziq-au-quebec?r=47am9s
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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.https://www.phenylcetonurie.ca/p/la-situation-du-palynziq-au-quebec?r=47am9s
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💪🏻 Strength training.
🙏🏻 Meditation.
🥤 Power smoothie (20g of protein equivalent).
Pretty good start of the day.
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💪🏻 Entraînement en force.
🙏🏻 Méditation.
🥤 Power smoothie (20 g d'équivalent protéine).
Ça commence bien la journée.#phenylcetonurie #pku #pkustrong #pkuawareness #phenylketonuria #lowprotein
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Allo!
Je viens de tomber sur ces craquelins Breton à faible teneur en protéines (0,1g pour 4 crackers), ils sont parfaits pour les PCUs ! 😊
Si vous connaissez d'autres collations à faible teneur en protéines, n'hésitez pas à les partager ! 🍪
#Phenylketonuria #Phenylcetonurie #PKUAwareness #PKULife #PKUDiets -
Why PKUTalk is so cool?
A shareable image to invite friends :ablobwave:
Pourquoi c'est si cool PKUTalk? Une image partageable pour inviter des amis. :ablobwave:
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Bleuets 🫐
Bananes 🍌
Avocats 🥑
Lait d’amande
Sirop d’érable
20g de protéines de formule
Une bonne façon de commencer la journée
😋 💪🏻👌🏻
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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
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À Montréal en ce moment même pour une prise de sang et s’assurer que tout se passe bien malgré mes différentes tactiques santé. 😝 #PheLevelFriday
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In Montreal right now for a blood test and make sure that everything goes well despite my different health tactics. 😝 #PheLevelFriday#phenylcetonurie #pku #pkustrong #pkuawareness #phenylketonuria #lowprotein
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Beau début de journée. ☀️
📌 6000 pas jusqu’à maintenant
📌 Musculation
📌 Jeûne de 14 heures
📌 40g de protéines de formules pour briser le jeûneTout ça avant 11:00!
Motivation, motivation 😛💪🏻
#phenylcetonurie #pku #pkustrong #pkuawareness #phenylketonuria #lowprotein
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Sharing my thoughts about willpower and #phenylketonuria after watching a very interesting podcast about nutrition and health.
http://phenylcetonurie.ca/2024/04/15/dont-rely-on-willpower/
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Annual greetings to those celebrating Easter on this day but have dietary restrictions regarding chocolate. Hope you had a good day and satisfied your sweet tooth in the way that suits you.🥚🐣 #DietaryRestriction #RareDisease #RareDiseaseCommunity #DairyFree #PKU #PKUAwareness #Mastodaoine
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Annual greetings to those celebrating Easter on this day but have dietary restrictions regarding chocolate. Hope you had a good day and satisfied your sweet tooth in the way that suits you.🥚🐣 #DietaryRestriction #RareDisease #RareDiseaseCommunity #DairyFree #PKU #PKUAwareness #Mastodaoine
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Annual greetings to those celebrating Easter on this day but have dietary restrictions regarding chocolate. Hope you had a good day and satisfied your sweet tooth in the way that suits you.🥚🐣 #DietaryRestriction #RareDisease #RareDiseaseCommunity #DairyFree #PKU #PKUAwareness #Mastodaoine
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Annual greetings to those celebrating Easter on this day but have dietary restrictions regarding chocolate. Hope you had a good day and satisfied your sweet tooth in the way that suits you.🥚🐣 #DietaryRestriction #RareDisease #RareDiseaseCommunity #DairyFree #PKU #PKUAwareness #Mastodaoine
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Dinner this evening: Vegetables overload and sweet potatoes 🍠
#phenylcetonurie #pku #pkustrong #pkuawareness #phenylketonuria #lowprotein
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Malgré tout cela, ça ne m'empêche pas de plancher sur le travail, me concentrer sur ma famille, maintenir mon blogue pour aider la communauté PCU et m'entraîner quotidiennement. ✌😎
📌 S'accomplir
📌 Vie de famille
📌 Communauté / Sens
📌 Santé#MaladiesRares #AfficheTonZèbre #RareDiseaseDay #Phenylcetonurie #Phenylketonuria #PKU #PKUawareness
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Mais comme tout le monde, j'ai besoin de protéines pour fonctionner, alors je consomme l'équivalent de 100g de protéines de ce "drink" (on peut appeler ça un médicament, on préfère "traitement thérapeutique) qui ne contient pas cet acide aminé.
#MaladiesRares #AfficheTonZèbre #RareDiseaseDay #Phenylcetonurie #Phenylketonuria #PKU #PKUawareness
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En ce 29 février 2024, on célèbre la #Journéedesmaladiesrares. 😁
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.#MaladiesRares #AfficheTonZèbre #RareDiseaseDay #Phenylcetonurie #Phenylketonuria #PKU #PKUawareness
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Les meilleurs bleuets du monde pour dessert. 🫐
#phenylcetonurie #pku #pkustrong #pkuawareness #phenylketonuria #lowprotein #antioxydants #LacStJean #santéglobale #globalhealth
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Did you know that February is the Rare diseases awareness month?
Saviez-vous que le mois de février est le mois de la sensibilisation aux maladies rares?#phenylketonuria #pku #phénylcétonurie #pkuawareness #rarediseases #maladiesrares #affichetonzèbre #showyourzebra
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Sad news for the #PKU community. This was the treatment that interested me the most.
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Sad news for the #PKU community. This was the treatment that interested me the most.
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I’m totally in phase with that. Of course, when it comes to #PKU, we need to add #phenylalanine management and amino acids formulas intake.☝️
#phenylketonuria #phenylcetonurie #pkustrong #pkuawareness -
Est-ce que la volonté est comme un muscle qu’on peut entraîner? J’ai besoin d’y croire! 😝
Il n’y a rien qui travaille ma volonté comme faire le petit déjeuner de ma fille EN PLUS d’être en train de jeûner. 💪🏻😅
#phenylcetonurie #pku #pkustrong #pkuawareness #phenylketonuria #lowprotein
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#CetoPCU, jour 1 (repas 2 de 2).
📌 Riz fri aux légumes (konjac)
📌 Salade verte avec huile d’olive, curcuma et câpres1g de protéines (méthode simplifiée) 🙌🏼
8g de glucides net 😄#ketopku #phenylcetonurie #pku #pkustrong #pkuawareness #phenylketonuria #lowprotein
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#CetoPCU jour 1, mon déjeuner (repas 1 de 2).
📌 Sandwich BLT (le « bacon » est de la noix de coco fumée)
📌 Frites de céleri rave
📌 Ketchup sans sucre cétoMoins de 4g de protéines (méthode simplifiée)
11g de glucides net
Excellent 😋#ketoPKU #phenylcetonurie #pku #pkustrong #pkuawareness #phenylketonuria #lowprotein
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Just shot 4 short videos for #PKU.
I was efficient lolDe retour aux vidéos si je veux que Meta arrête de me punir et de réduire la portée de mes messages…
#phenylketonuria #phenylcetonurie #pku #pkuproblems #pkustrong #pkuawareness