Inspiring interview on childbirth, #newbornscreening & my family's story just up - by the brilliant Dr. Kee Chan on her "What is Public Health" podcast. A deep dive on birth, DNA, genetics, #raredisease + my new book. Have a listen 🎧+ pls share! https://open.spotify.com/episode/0Z5vO7UkCdQPbB34clCgZZ #PKU #scicom

Did my blood test but completely forgot to take pictures of the sheet.

Just imagine a complete disarray of blood spots. Meanwhile, you'll have to settle on my finger instead.

#blood #bloodtest #pku #phebylketonuria #pcu #phenylcetonurie

News about the Egoo Phe system, a small device that allows you to determine phenylalanine levels in 30 minutes at home!
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Des nouvelles du système Egoo Phe, ce petit appareil qui permet de déterminer les niveaux de phenylalanine en 30 minutes à la maison!

#Phenylketonuria #Phenylcetonurie #PKU

https://www.phenylcetonurie.ca/p/un-nouvel-outil-pour-simplifier-la?r=47am9s&utm_campaign=post&utm_medium=web&showWelcomeOnShare=false

📰 Monthly news, 🥗 low-protein recipes, and 🐶 dog photos all free to subscribers at PigPen.

Plus, you get a 🆓 copy of "Mental Health & PKU" when you sign up.

Join the conversation: https://www.pigpen.page/may-2025/

#PKU #Phenylketonuria #PCU #LowProtein #RareDisease #BrainInjury #Concussion #ABI #TBI #MentalHealth

"The volunteer committee advising on newborn screening must be reinstated!"- on STAT News this morning, a strong opinion column by my daughter Lillian Isabella, with the "why", she knows...she has the rare health condition #PKU. “I got a blood test as a newborn that changed the course of my life forever,” she writes, now a playwright and producer in New York City. https://www.statnews.com/2025/04/24/achdnc-newborn-screening-advisory-committee-terminated-rfk-jr-trump/

A new blog by @pcublogue which adequately explains the trouble of not managing the diet well with PKU www.phenylcetonurie.ca/p/phenylceto... #pku #pcu #phenylketonuria #phenylcetonurie #health #healthcare #genetherapy

Phénylcétonurie : une maladie ...

A new blog by @pcublogue which adequately explains the trouble of not managing the diet well with PKU

https://www.phenylcetonurie.ca/p/phenylcetonurie-une-maladie-dadhesion?publication_id=3096512&post_id=161908964&isFreemail=true&r=4i1emi&triedRedirect=true

#pku #pcu #phenylketonuria #phenylcetonurie #health #healthcare #genetherapy

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

So, I've been alternating so much between #KetoPKU and carbs #PKU diet in the last weeks that I somehow became a metabolic machine. :meow_sweat:

I now have a studied blood ketometer and even if I ate near 150g of net carbs yesterday, I still had ketones in my blood at noon today. 🤯

This is incredible news for me as maintaining the #KetoPKU diet for a long time is extremely hard for the will power.

La meilleure fonctionnalité de l'application Substack. Ouvrez le son!

The best feature of the Substack app. Turn on the sound!

#Phenylketonuria #Phenylcetonurie #PKU

https://videos.pkutalk.com/w/fKVpxv81UYYShJsBJuEHo6

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

https://www.pigpen.page/april-2025/

Palynziq news. Nouvelles de Palynziq.

#Phenylketonuria #Phenylcetonurie #PKU

https://www.phenylcetonurie.ca/p/bonne-nouvelle-pour-la-phenylcetonurie?r=47am9s

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

https://www.pigpen.page/origins-of-pku-treatment/

The fantastic @poconnor has released a new newsletter about the origins of PKU. You can read it here:

https://www.pigpen.page/origins-of-pku-treatment/?ref=pigpen-pku-brain-injury-mental-health-newsletter

#pku #phenylketonuria #pcu #phenylcetonurie #health #nhs #birmingham #sheilajones #uk

When you use up all your protein allowance on buttered popcorn…

#LivingWithPKU #pku #LowProtein #RareDisease #pcu #Phenylketonuria

Sunday fun day in Druids Glen making some low protein sweet and savoury
#PKU #Metabolic #Sauerkraut #Toasties #Muffins #Ireland

PKU-Friendly, low & no protein Easter Ideas from the team at Birmingham Children's Hospital!

#PKU #Phenylketonuria #LowProtein #LivingWithPKU #EasterIdeas #Easter