🧒 PKU Kids Books! 🖍️ Accessible, fun, low‑protein books for PKU kids
Specially crafted for children with PKU, these books weave education and entertainment.
The Low Phe ABC Book introduces protein‑free foods in bright illustrations, and the colouring companion invites playful learning—ideal for family engagement.
“A wonderful resource” Prof. Anita MacDonald
#pku #pkukids #phenylketonuria #livingwithpku #pcu #lowproteinlife #lowphenylalanine #lowproteinliving #raresisease #books #kidsbooks
I wish more people knew about the use of food restrictions as a medical treatment.
Many see the word 'diet' or food restrictions as a lifestyle choice, to be ignored or dismissed.
In truth, many medical conditions are treated through the use of food restrictions.
You never know what someone else is dealing with, but you can choose how you react to their requests.
What do you wish people knew more about?
#LowProtein #PKU #Phenylketonuria #RareDisease #MetabolicDisorder #LivingwithPKU
Hi everyone, Just letting you know that Tonight at 6pm there is a LinkedIn Live Event Celebrating PKU Awareness Month.
All speakers either have PKU, or are a mum to PKU-ers.
I hope you will join us! https://www.linkedin.com/events/7327788292572069888/about/
Hi everyone. There is an online event with 4 speakers who have PKU, and one Mum! We are all sharing our PKU stories in creative ways (writing, film, stage...).
I hope you will join us! 23rd May @ 6pm London / 7pm Berlin
https://www.linkedin.com/events/rarecreatives-lives-storyteller7327788292572069888/theater/
PKU 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.
https://www.pigpen.page/pku-and-being-hangry/
#LivingWithPKU #PKU #PCU #Phenylketonuria #RareDisease #PKUFood #RareDiseaseAwareness #Hanger #Hungry
April'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 #PKU news,
#lowprotein recipes, mental health tips in your
inbox!
#LivingWithPKU #pku #PCU #Phenylketonura
#PKUFood
(Edited to correct markdown errors)
April'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 #PKU news, #low-protein recipes, mental heatlh tips in your inbox!
#LivingWithPKU #PCU #Phenylketonura #PKUFood #RareDisease #BrainInjury #MentalHealth
PKU was discovered in 1934, but was considered untreatable for decades. Then, a team at the Birmingham Children’s Hospital took up the challenge...
#PKU #LivingWithPKU #Phenylketonuria #Birmingham #RareDisease #RareDiseaseAwareness
When you use up all your protein allowance on buttered popcorn…
#LivingWithPKU #pku #LowProtein #RareDisease #pcu #Phenylketonuria
PKU-Friendly, low & no protein Easter Ideas from the team at Birmingham Children's Hospital!
#PKU #Phenylketonuria #LowProtein #LivingWithPKU #EasterIdeas #Easter
I’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.
#PKU #phenylketonuria #LivingWithPKU #raredisease #rarediseaseday
🦃🎄New blog for the festive season:
Tips and links to help with a low protein Christmas or Thanksgiving.
I’ve included PKU and low protein menu suggestions & recipes.
Plus, links to low protein shopping websites.
https://www.pigpen.page/pku-at-christmas/
#pku #pcu #lowprotein #phenylketonuria #phenylcetonurie #LivingWithPKU #ClassicalPKU #EasyPKU #thanksgiving #Christmas #metabolicdiet #lowproteindiet
New 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.
Just in time for the #FediBookFair!
Mental health & PKU, a #free excerpt from my book #LivingWithPKU is out now.
Living with #PKU: A low protein life with #Phenylketonuria is an invaluable resource for adults and teens with PKU, or for families new to the disorder
Just subscribe for the link. It is free to sign up, and you can leave any time you like.
Newsletters are hosted by #fediverse friendly #Ghost
Grab your copy of 'Mental health & PKU' when you subscribe to https://www.PigPen.page
Membership is free and you get:
➡️ A free copy of the 7 mental health chapters from #LivingWithPKU
➡️ Email notifications of all new articles & #PKURecipes
➡️ to Join the conversation, comment and share your hacks.
Your comments and feedback help shape what comes next, so I'd love to hear from you.
Thrilled to announce a new feature at PigPen 🐷 🖋️ Comments & engagement!
Huge thanks to @soheb for being a great beta tester.
Join the conversation, find your community and share your recipe tweaks & hacks.
Simple & free to join, I write about PKU, brain injury, & mental health.
Can’t wait to hear your thoughts and ideas.
#PKU #LivingWithPKU #LivingwithMildBrainInjury #mentalhealth #Author #AmWriting.
It begins: my first phone call from the surgery to confirm if I absolutely need my monthly #PKU medicine “only it’s a bit expensive”.
Apparently, they plan to call to check this with me every month.
Going to head this off at the pass by getting my Clinic to write them a letter, and send them the #NSPKU documents explaining pku to #GP surgeries 🤞🤞🤞
Besoin d'un coup de main pour gérer votre régime PCU? En français ou en anglais, voici EasyPKU, revue et améliorée! 😃
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Need a hand managing your PKU diet? In French or English, here is EasyPKU, revised and improved! 😃
