Lmst

@lauren Just blowing him where the Pampers is.

Another good #union branch meeting #PCU #Psychotherapy and #Counselling Union #North and #Midlands branch. My first as secretary rather than chair.

It's been a while, but I've finished my Magnus Opus

#blood #bloodspot #bloodtest #nhs #health #pku #phenylketonuria #pcu #phenylcetonurie

@poconnor has wrote a new newsletter about what she came away with at the NSPKU. It's exciting stuff!

https://www.pigpen.page/whats-in-the-treatment-pipeline/

#pku #phenylketonuria #pcu #phenylcetonurie

Watched this by @phenylketonurianotebook very interesting (and my goblin brain appreciates the YT short):

https://www.youtube.com/shorts/XB_33DDwDHg

#phenylketonuria #phenylcetonurie #pku #pcu

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.

#phenylketonuria #pku #phenylcetonurie #pcu #lowprotein

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

Low protein rice, from Biotech JP. Also says Echigo on the packet.

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

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

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

#pku #phenylketonuria #pcu #phenylcetonurie #food #cooking

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:

https://www.pigpen.page/pku-kids-books/

#PKU #PCU #Phenylketonuria #RareDisease #LowProtein #LowPhe

My latest blood test results was 676umol/L! (My last one was 950+ umol/L, so this is great news) 🥳

(I've only now realised I've completely forgot to provide blood spot samples as usual, but you know what to expect by now 😂)

#blood #bloodspot #pku #phenylketonuria #pcu #phenylcetonurie

Low Protein Waldorf Salad recipe for PKU

An easy, & PKU-friendly Waldorf salad for a quick, healthy lunch. 1g protein / 1 phe in the UK. I use pine nuts for the protein as you get more 'nuts' per serving.

https://www.pigpen.page/low-protein-waldorf-salad/

#PKU #PCU #PKUFood #PKURecipe #LowProtein #Phenylketonuria

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 #PCU #phenylketonuria #RareDisease #LivingWithPKU