Shakedown Social

poconnorPKU and being 'hangry'. Satiety (feeling full) can be a problem for those with PKU. Here are a few tips for those following a low-protein diet.<a href="https://www.pigpen.page/pku-and-being-hangry/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.pigpen.page/pku-and-being-hangry/</a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> <a href="https://pkutalk.com/tags/PCU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PCU</a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Phenylketonuria</a> <a href="https://pkutalk.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://pkutalk.com/tags/PKUFood" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKUFood</a> <a href="https://pkutalk.com/tags/RareDiseaseAwareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseaseAwareness</a> <a href="https://pkutalk.com/tags/Hanger" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Hanger</a> <a href="https://pkutalk.com/tags/Hungry" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Hungry</a>

poconnorApril's update is PACKED with:- 🐰 Easter tips,- 🍰 ideas for school holiday baking,- 📋 new brain injury research,- 📝 and a chance to report on the NSPKU conference.Sign up today and be the first to get <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> [<a href="https://pkutalk.com/tags/PKU" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://pkutalk.com/tags/PKU</a>] news, <a href="https://pkutalk.com/tags/low" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#low</a> [<a href="https://pkutalk.com/tags/low]-protein" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://pkutalk.com/tags/low]-protein</a> recipes, mental heatlh tips in your inbox!<a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> [<a href="https://pkutalk.com/tags/LivingWithPKU" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://pkutalk.com/tags/LivingWithPKU</a>] <a href="https://pkutalk.com/tags/PCU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PCU</a> [<a href="https://pkutalk.com/tags/PCU" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://pkutalk.com/tags/PCU</a>] <a href="https://pkutalk.com/tags/Phenylketonura" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Phenylketonura</a> [<a href="https://pkutalk.com/tags/Phenylketonura" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://pkutalk.com/tags/Phenylketonura</a>] <a href="https://pkutalk.com/tags/PKUFood" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKUFood</a>…

poconnorApril's update is PACKED with:- 🐰 Easter tips,- 🍰 ideas for school holiday baking,- 📋 new brain injury research, - 📝 and a chance to report on the NSPKU conference.Sign up today and be the first to get <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> news, <a href="https://pkutalk.com/tags/low" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#low</a>-protein recipes, mental heatlh tips in your inbox!<a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://pkutalk.com/tags/PCU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PCU</a> <a href="https://pkutalk.com/tags/Phenylketonura" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Phenylketonura</a> <a href="https://pkutalk.com/tags/PKUFood" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKUFood</a> <a href="https://pkutalk.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://pkutalk.com/tags/BrainInjury" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#BrainInjury</a> <a href="https://pkutalk.com/tags/MentalHealth" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MentalHealth</a><a href="https://www.pigpen.page/april-2025/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.pigpen.page/april-2025/</a>

poconnorPKU was discovered in 1934, but was considered untreatable for decades. Then, a team at the Birmingham Children’s Hospital took up the challenge...<a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Phenylketonuria</a> <a href="https://pkutalk.com/tags/Birmingham" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Birmingham</a> <a href="https://pkutalk.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://pkutalk.com/tags/RareDiseaseAwareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseaseAwareness</a><a href="https://www.pigpen.page/origins-of-pku-treatment/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.pigpen.page/origins-of-pku-treatment/</a>

poconnorWhen you use up all your protein allowance on buttered popcorn…<a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#pku</a> <a href="https://pkutalk.com/tags/LowProtein" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LowProtein</a> <a href="https://pkutalk.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://pkutalk.com/tags/pcu" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#pcu</a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Phenylketonuria</a>

poconnorPKU-Friendly, low & no protein Easter Ideas from the team at Birmingham Children's Hospital!<a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Phenylketonuria</a> <a href="https://pkutalk.com/tags/LowProtein" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LowProtein</a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://pkutalk.com/tags/EasterIdeas" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#EasterIdeas</a> <a href="https://pkutalk.com/tags/Easter" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Easter</a>

poconnorLowest result in over two years!271 <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#phenylketonuria</a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://pkutalk.com/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#raredisease</a> <a href="https://pkutalk.com/tags/testing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#testing</a>

poconnorMonthly phe test day. Been a bit sick lately, and craving the calories. Hoping for a good result in a few daysUntil then, fairy proud of this effort!<a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#phenylketonuria</a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://pkutalk.com/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#raredisease</a> <a href="https://pkutalk.com/tags/testing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#testing</a>(Edited to add photo 🤦‍♀️)

poconnorI’m one of many living with PKU, a rare disease. 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.Today, I will be joining an NHS event aimed at raising awareness of rare disease among medical staff.Hope you all have a great day, and let me know what you are up to. <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#phenylketonuria</a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://pkutalk.com/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#raredisease</a> <a href="https://pkutalk.com/tags/rarediseaseday" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#rarediseaseday</a>

poconnorNew blog: ➡️ How I responded when my GP surgery asked if I still need my PKU supplement and foods, with example email. Fingers crossed, I seem to have solved the problem. Hopefully, this will help others."This was the first time a GP had questioned my PKU supplies. The temptation to respond with “are you being serious right now!” was pretty strong"Have you had similar problems? I'd love to hear how you managed them.<a href="https://buff.ly/3YGntcV" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://buff.ly/3YGntcV</a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://pkutalk.com/tags/pkuawareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#pkuawareness</a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Phenylketonuria</a>

poconnorOnly 300 of those calories were from <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> supplement so time for me to say good bye to that falsehood.Also, Goodbye butter & mayonnaise. We had fun times, but you brought middle-aged spread along too and that is just not cool.<a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://pkutalk.com/tags/health" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#health</a> <a href="https://pkutalk.com/tags/foodpuns" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#foodpuns</a>

poconnorOk, accountability time. It’s been a rough year, but I need to get on top of my fitness & weight.Posting on here because I really do need the push & motivation that socials provide. Also, because you guys are just lovely & encouraging 💐I’ve picked up the Couch to 5K running app, and am going slowly to shake off old injuries.Today I started calorie counting, and boy was that a shock! Most of my calories consumed by lunchtime. <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://pkutalk.com/tags/health" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#health</a>

Trist | PCU Blogue :superpcu: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. <a href="https://pkutalk.com/tags/Health" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Health</a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#phenylketonuria</a> <a href="https://pkutalk.com/tags/phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#phenylcetonurie</a> <a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#pku</a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a>

SohebThere was a great panel talk by <a href="https://pkutalk.com/@poconnor" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@poconnor</a> about living with PKU and sapropterin.One of the questions was "are you doing well with phe levels", and one of the points was that how life changes do have a severe impact on phe levels.As someone who moved house quite recently *AND* had a job change, I am proof that big life changes as well as changes to routine absolutely do mess up phe levels.<a href="https://pkutalk.com/tags/pku" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#pku</a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://pkutalk.com/tags/ClassicalPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ClassicalPKU</a> <a href="https://pkutalk.com/tags/diet" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#diet</a> <a href="https://pkutalk.com/tags/lowProteinDiet" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#lowProteinDiet</a> <a href="https://pkutalk.com/tags/LowProtein" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LowProtein</a> <a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#phenylketonuria</a> <a href="https://pkutalk.com/tags/phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#phenylcetonurie</a>

SohebIn PKU news, a good friend of mine Paul has updated his PKU Insights YouTube channel to discuss some of the new things in the future.You can check it out here (and subscribe to the YouTuvbe channel!)<a href="https://www.youtube.com/watch?v=iMPr16eAuGo" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.youtube.com/watch?v=iMPr16eAuGo</a><a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> <a href="https://pkutalk.com/tags/PKUInsights" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKUInsights</a> <a href="https://pkutalk.com/tags/YouTube" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#YouTube</a> <a href="https://pkutalk.com/tags/phenylkeotnuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#phenylkeotnuria</a> <a href="https://pkutalk.com/tags/phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#phenylcetonurie</a> <a href="https://pkutalk.com/tags/lowProtein" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#lowProtein</a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a>

poconnorWhen every month is <a href="https://pkutalk.com/tags/pkuawarenessmonth" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#pkuawarenessmonth</a> … 🥳<a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://pkutalk.com/tags/LowProtein" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LowProtein</a> <a href="https://www.instagram.com/reel/C6betLNoKnm/?igsh=YjBta3IydnhiMzE3" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.instagram.com/reel/C6betLNoKnm/?igsh=YjBta3IydnhiMzE3</a>

poconnorThe March PigPen newsletter includes: ➡️ possible new <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> treatment ➡️ help with identity after <a href="https://pkutalk.com/tags/BrainInjury" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#BrainInjury</a> ➡️ shape your health care in future🥂Sneak peek of <a href="https://pkutalk.com/tags/NewBook" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NewBook</a> The Red Hat Stories!<a href="https://buff.ly/4bXz3pU" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://buff.ly/4bXz3pU</a> <a href="https://pkutalk.com/tags/TheRedHatStories" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#TheRedHatStories</a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://pkutalk.com/tags/LivingWithMildBrainInjury" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithMildBrainInjury</a>

Mark MaguireTo all who celebrate, Easter greetings, especially to those today who have (or have kids with) medical dietary restrictions on chocolate.💛🐣☀️🌺 <a href="https://mastodon.ie/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> <a href="https://mastodon.ie/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://mastodon.ie/tags/PKUparenting" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKUparenting</a> <a href="https://mastodon.ie/tags/EasterSunday2023" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#EasterSunday2023</a> <a href="https://mastodon.ie/tags/EasterSunday" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#EasterSunday</a> <a href="https://mastodon.ie/tags/EasterEgg" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#EasterEgg</a> <a href="https://mastodon.ie/tags/chocolate" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chocolate</a> <a href="https://mastodon.ie/tags/AnCh%C3%A1isc" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#AnCháisc</a>

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