I know a few folks in the #phenylketonuria community have played around with the egoo health pku bloodspot monitoring device, and I was wondering how you found it? Was it accurate? Easy to use? Would you recommend it?
#PhenylKetonUria
It's been a while, but I've finished my Magnus Opus
#blood #bloodspot #bloodtest #nhs #health #pku #phenylketonuria #pcu #phenylcetonurie
🔬 The latest on PKU treatment from NSPKU's October conference - and what they might mean for those living with PKU.
💊 Sepiapterin (Sephience)
🧪 JNT-517, and MZE782
🩸 At-home phe monitors
🗓️ Published on PigPen.page (Want to be the first to see my posts? Subscribe for free emails.)
🔗 https://www.pigpen.page/whats-in-the-treatment-pipeline/
#PKU #Phenylketonuria #RareDisease #InheritedMetabolicDisorders #LivingWithPKU #NSPKU
@poconnor has wrote a new newsletter about what she came away with at the NSPKU. It's exciting stuff!
Watched this by @phenylketonurianotebook very interesting (and my goblin brain appreciates the YT short):
Moi qui essaie désespérément de créer des craquelins faibles en protéines ET faibles en glucides net 😅😭
*
Me desperately trying to create crackers low in protein AND low in net carbohydrates 😅😭
A great start to the week!
The latest issue of the NSPKU News & Views popped through the door first thing.
#LivingwithPKU #PKUcommunity #PKULife #Phenylketonuria, #PKU
Just tried using the Mevalia rice and it's the one for me (an old photo of the rice with veggies).
For one I have freedom in cooking the rice (I cook it in water with vegetable stock cube mixed for added flavour). Another reason is I can taste each rice grain.
Third is that it ain't sticky when cooked (unless overcooking).
This is one of the rare PKU rice that doesn't taste like pasta but manages to be even better than normal rice lol.
Finally - an actual PKU post!
I got an email from Promin saying they've got this new low protein rice - rice which is pretty much "normal rice" but has gone through some process to make it only half an exchange.
As someone who loves rice, I'm going to give this a try later on!
You can buy the packet of rice online here: https://prominpku.com/product/echigo-low-protein-pre-cooked-rice/
#phenylketonuria #phenylcetonurie #pcu #pku #lowprotein #lowproteindiet
The brilliant @poconnor has shared a PKU friendly recipe - Fennel and Orange salad (with clearly detailed ingredients that have protein, so you know where to skip):
https://www.pigpen.page/fennel-and-orange-salad/
#pku #lowprotein #phenylketonuria #pcu #phenylcetonurie #food #recipes #lowproteinrecipes #diet #lowproteindiet
28th June and I’m thinking today of the massive advances made in the treatment of PKU in Ireland over the last 50+ years. But I’m also thinking of those parts of the world where people are unable to access proper treatment and without automatic screening at birth.
#ipkuday2025 #PKU #phenylketonuria
Catch up on this great discussion on creativity and rare disease.
Rare Creatives’ Lives: Storytellers on Rare Disease In the Arts:
1. Who first inspired them to become creatives?
2. What are their creative processes like now?
3. How their storytelling shares rare disease lived experience?
4. Advice for those who dream of a creative career?
5. Why storytellers can spark advocacy in a rare disease community?
https://www.youtube.com/watch?v=miuzmwNEGHs
#PKU #PKUAwareness #PKUDay #PCU #Phenylketonuria #RareDisease
🧒 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
Two interesting PKU announcements on a single day doesn't happen often, but here's another one: PTC announced today that the European Commission has granted marketing authorisation for Sephience (sepiapterin/BH2)! There's hope that it will work for at least some of us BH4 non-responders, too. And it's perfect timing because I have an appointment at the clinic tomorrow.
The registration for the E.S.PKU conference 2025 in Hamburg is open! Who else is planning to go? (@soheb or @poconnor maybe?)
On Father's Day, I took a moment to reflect on my role as a father with the challenges posed by phenylketonuria. A new article on my blog. #phenylketonuria #ad open.substack.com/pub/pcublogu...
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
Made this last night, but used 2 OXO cubes instead of the veg stock in the recipe, and OH WOW was it delicious!
www.vitafriendspku.co.uk/pku/recipe/vegetable-medley-pilau-rice
I remember sitting with parents, their faces etched with worry after their newborn was diagnosed with Phenylketonuria, or PKU. It's a moment filled with so many questions. #bloodphenylalanine #Javygtor #Kuvan #Phenylketonuria #PKUtreatment #Sapropterin #specialdiet
Just released my new PKU books. An ABC reader and a colouring book 👏
- Designed especially for children with Phenylketonuria
- Full of foods which are considered protein-free for PKU in the UK,
- and have been checked by PKU clinicians.
Let me know what you think, or grab your copy here:
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