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#phenylketonuria

3 posts3 participants1 post today
PCU Blogue<p>Je teste l'appareil Egoo Phe... et je fais une petite expérience en même temps! <br>*<br>I'm testing the Egoo Phe device... and doing a little experiment at the same time!</p><p><a href="https://pkutalk.com/tags/Phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylcetonurie</span></a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylketonuria</span></a> </p><p><a href="https://videos.pkutalk.com/w/vShQB7nSqQZ8KQTkiwWyk8" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">videos.pkutalk.com/w/vShQB7nSq</span><span class="invisible">QZ8KQTkiwWyk8</span></a></p>
poconnor<p>When you use up all your protein allowance on buttered popcorn…</p><p><a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LivingWithPKU</span></a> <a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pku</span></a> <a href="https://pkutalk.com/tags/LowProtein" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LowProtein</span></a> <a href="https://pkutalk.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> <a href="https://pkutalk.com/tags/pcu" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pcu</span></a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylketonuria</span></a></p>
poconnor<p>PKU-Friendly, low &amp; no protein Easter Ideas from the team at Birmingham Children's Hospital!</p><p><a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylketonuria</span></a> <a href="https://pkutalk.com/tags/LowProtein" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LowProtein</span></a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LivingWithPKU</span></a> <a href="https://pkutalk.com/tags/EasterIdeas" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EasterIdeas</span></a> <a href="https://pkutalk.com/tags/Easter" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Easter</span></a></p>
Soheb<p>Our workplace has moved to a new location. It's lovely, but it's also equally frustrating to someone like me who has PKU.</p><p><a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pku</span></a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a> <a href="https://pkutalk.com/tags/pcu" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pcu</span></a> <a href="https://pkutalk.com/tags/phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylcetonurie</span></a></p>
PCU Blogue<p>Blood test results to know your phenylalanine levels in 30 minutes? It's possible! </p><p><a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a> <a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pku</span></a> <a href="https://pkutalk.com/tags/egoophe" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>egoophe</span></a> </p><p><a href="https://videos.pkutalk.com/w/azW3bQfUXpePtXUtdb1Ntb" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">videos.pkutalk.com/w/azW3bQfUX</span><span class="invisible">pePtXUtdb1Ntb</span></a></p>
PCU Blogue<p>Okay! Am I the only one who thinks we should have "chips" (or anything salty) that contain 20g of protein amino acids instead of just the sweet stuff??? 🧐🤯</p><p>Some of us don’t have a sweet tooth, I can’t be the only one 😂</p><p><a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylketonuria</span></a></p>
PCU Blogue<p>J'ai quelque chose de très cool à vous partager qui peut vraiment nous aider avec la gestion du régime de la <a href="https://pkutalk.com/tags/ph%C3%A9nylc%C3%A9tonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phénylcétonurie</span></a>. Gardez l'oeil ouvert lundi prochain! 👀<br>*<br>I have something really cool to share with you that can really help us with <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a> diet management. Keep an eye out for it next Monday!</p>
poconnor<p>Spring news for subscribers: <br>🎉new UK patient guides, <br>🏹updates on the NSPKU conference and activity weekend, <br>🔍plus insights into brain injury rehab. </p><p>📖📚Also, my Low Phe ABC book is almost here! </p><p>➡️ Subscribe for more, get a FREE book, &amp; join the conversation. </p><p><a href="https://www.pigpen.page/march-2025/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">pigpen.page/march-2025/</span><span class="invisible"></span></a> </p><p><a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylketonuria</span></a> <a href="https://pkutalk.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> <a href="https://pkutalk.com/tags/LowProtein" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LowProtein</span></a> <a href="https://pkutalk.com/tags/BrainInjury" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>BrainInjury</span></a> <a href="https://pkutalk.com/tags/NewBook" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NewBook</span></a></p>
PCU Blogue<p>Vous aimez le thé matcha? 😁🙌 Si oui, cette belle recette avec la formule de Nutricia Métaboliques, le Phenylade GMP ULTRA à la vanille, est pour vous.<br>*<br>Do you like matcha tea? 😁🙌 If so, this beautiful recipe with Nutricia Metabolics' formula, the vanilla flavored Phenylade GMP ULTRA, is for you.</p><p><a href="https://pkutalk.com/tags/ad" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ad</span></a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a> <a href="https://pkutalk.com/tags/phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylcetonurie</span></a> </p><p><a href="https://youtube.com/shorts/8MWVcSrqhv4?feature=share" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">youtube.com/shorts/8MWVcSrqhv4</span><span class="invisible">?feature=share</span></a></p>
poconnor<p>Lowest result in over two years!</p><p>271</p><p> <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LivingWithPKU</span></a> <a href="https://pkutalk.com/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>raredisease</span></a> <a href="https://pkutalk.com/tags/testing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>testing</span></a></p>
Soheb<p>Did a blood test this morning. Added more blood spots as it was starting to get a lil too serious in here 😤🥴😎</p><p><a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a> <a href="https://pkutalk.com/tags/phenylxetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylxetonurie</span></a> <a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pku</span></a> <a href="https://pkutalk.com/tags/pcu" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pcu</span></a> <a href="https://pkutalk.com/tags/lowprotein" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>lowprotein</span></a> <a href="https://pkutalk.com/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>raredisease</span></a> <a href="https://pkutalk.com/tags/nhs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>nhs</span></a> <a href="https://pkutalk.com/tags/blood" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>blood</span></a></p>
poconnor<p>Monthly phe test day. Been a bit sick lately, and craving the calories. Hoping for a good result in a few days</p><p>Until then, fairy proud of this effort!</p><p><a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LivingWithPKU</span></a> <a href="https://pkutalk.com/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>raredisease</span></a> <a href="https://pkutalk.com/tags/testing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>testing</span></a></p><p>(Edited to add photo 🤦‍♀️)</p>
poconnor<p>I’m one of many living with PKU, a rare disease. </p><p>Rare Disease Day is observed every year on 28 February (or 29 February in leap years). The day serves as a powerful focal point, driving advocacy efforts at local, national, and international levels.</p><p>Today, I will be joining an NHS event aimed at raising awareness of rare disease among medical staff.</p><p>Hope you all have a great day, and let me know what you are up to.<br><a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LivingWithPKU</span></a> <a href="https://pkutalk.com/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>raredisease</span></a> <a href="https://pkutalk.com/tags/rarediseaseday" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>rarediseaseday</span></a></p>
PCU Blogue<p>When we are at work, we usually try not to attract too much attention. But yesterday, while preparing my amino acid formula, the corner of the bag opened too quickly which generated a small cloud of chocolate formula around me... 😳🤦🏼‍♂️</p><p><a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a></p>
PCU Blogue<p>Article important sur mon blogue pour l’avenir de l’accès aux traitements pour la <a href="https://pkutalk.com/tags/phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylcetonurie</span></a> au <a href="https://pkutalk.com/tags/Quebec" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Quebec</span></a>. Merci à Marika et sa fille Gaïa d’avoir pris le temps d’en parler à la radio. <br>*<br>Important article on my blog for the future of treatments access for <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>phenylketonuria</span></a> in <a href="https://pkutalk.com/tags/Quebec" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Quebec</span></a>. Thanks to Marika and her daughter Gaïa for taking the time to talk about it on the radio. </p><p><a href="https://pkutalk.com/tags/Palynziq" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Palynziq</span></a> <a href="https://pkutalk.com/tags/PKUawareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKUawareness</span></a></p><p><a href="https://www.phenylcetonurie.ca/p/la-situation-du-palynziq-au-quebec?r=47am9s" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">phenylcetonurie.ca/p/la-situat</span><span class="invisible">ion-du-palynziq-au-quebec?r=47am9s</span></a></p>
PCU Blogue<p>In average, 80% of my traffic now comes from email. Facebook rarely reach 30%. Even my recent most popular article (the one about the new treatment) only accounted for 39% of the traffic while email was still 49%.</p><p>First, I'm happy to see this because that means that more members of the <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> community sees that they have total control when they subscribe directly to my blog (vs the <a href="https://pkutalk.com/tags/Meta" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Meta</span></a> algorithm). </p><p>Second, that means that my days of sharing links on <a href="https://pkutalk.com/tags/Facebook" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Facebook</span></a> are numbered. <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylketonuria</span></a></p>
PCU Blogue<p>Je parle de glucides ce matin sur mon blogue en partageant mon analyse d'une étude très intéressante (c'était sûr qu'elle allait m'interpeller)!</p><p><a href="https://www.phenylcetonurie.ca/p/resume-detude-statut-des-glucides?r=47am9s" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">phenylcetonurie.ca/p/resume-de</span><span class="invisible">tude-statut-des-glucides?r=47am9s</span></a></p><p>I'm talking about carbohydrates this morning on my blog by sharing my analysis of a very interesting study (it was sure to interest me)!</p><p><a href="https://pkutalk.com/tags/Phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylcetonurie</span></a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylketonuria</span></a></p>
PCU Blogue<p>Available Monday morning!<br>Disponible lundi matin!</p><p><a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylketonuria</span></a> <a href="https://pkutalk.com/tags/Phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylcetonurie</span></a></p>
PCU Blogue<p>OK I need to share these because they are too good lol</p><p>Credit: NPKUA </p><p><a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylketonuria</span></a></p>
PCU Blogue<p>Joyeuse St-Valentin tout le monde! 😄<br>Happy Valentine's Day everyone! </p><p><a href="https://pkutalk.com/tags/Phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylcetonurie</span></a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylketonuria</span></a> </p><p><a href="https://www.phenylcetonurie.ca/p/frequenter-quelquun-qui-a-la-phenylcetonurie?r=47am9s&amp;utm_campaign=post&amp;utm_medium=web&amp;showWelcomeOnShare=false" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">phenylcetonurie.ca/p/frequente</span><span class="invisible">r-quelquun-qui-a-la-phenylcetonurie?r=47am9s&amp;utm_campaign=post&amp;utm_medium=web&amp;showWelcomeOnShare=false</span></a></p>
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