#pcu — Public Fediverse posts

I've realised I haven't posted here in a while. Also, haven't posted about movies, books, or PKU.

PKU - my last result was 325umol/L, which is good news but a little higher! I did change the diet so that was kind of expected, was actually lower than expected 🤯

Movies: Watched Ready or Not 2: Here They Come. It was fine, kind of like TWKY but not quite so supernatural.

Books: How long have you got? 🤣

#movies #pku #phenylketonuria #pcu #phenylcetonurie

RE: https://pkutalk.com/@soheb/116188606885004550

The results for this bloodspot was 227umol/L!

My weight lifting seems to be helping quite a bit with the bloodspots! Also, I've rounded down with my exchanges, which has helped quite a bit (I rarely ever hit 2 exchanges exactly).

I'm trying to cook my own food now to cut down on visceral fat that my weighing scales report back, so next results should be interesting...

#phenylketonuria #phenylcetonurie #pku #pcu

To all PKU folks - Share your story!

@poconnor has got some great PKU stories on her blog - one from yours truly 🧐 - and you can add your story into the mix as well!

Visit this link to find out more: https://www.pigpen.page/share-your-story-2/

#phenylketonuria #phenylcetonurie #pku #pcu #lowprotein

@lauren Just blowing him where the Pampers is.

https://youtu.be/zKvbJM61fYI

#Movies #PCU

RE: https://pkutalk.com/@soheb/115830394945307434

I've been so busy posting about movies and books, I forgot to post some news about my PKU!

This strange attempt at blood spot gave me a result of 277umol/L!

SCORE!

#pku #phenylketonuria #pcu #phenylcetonurie #health #healthcare #nhs

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

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

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

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

🧒 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

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

📰 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

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

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 [https://pkutalk.com/tags/PKU] news,
#low [https://pkutalk.com/tags/low]-protein recipes, mental heatlh tips in your
inbox!

#LivingWithPKU [https://pkutalk.com/tags/LivingWithPKU] #PCU
[https://pkutalk.com/tags/PCU] #Phenylketonura
[https://pkutalk.com/tags/Phenylketonura] #PKUFood…

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/

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

Our workplace has moved to a new location. It's lovely, but it's also equally frustrating to someone like me who has PKU.

#pku #phenylketonuria #pcu #phenylcetonurie

Chaired our #North and #Midlands (#England) #Counselling and #Psychotherapy #Union #PCU meeting. Am energised by our branch.

Как запустить собственную GSM-сеть за пять минут при помощи SDR

Приветствую всех! Давным-давно я уже рассказывал про то, как в домашних условиях поднять GSM-сеть при помощи комплектующих, доступных любому школьнику. И в той статье я мельком упомянул, что идеальным в плане производительности вариантом будет запускать сети при помощи SDR, а не телефонов. Итак, в сегодняшней статье поговорим о том, как быть владельцам SDR, желающим запустить свою GSM-сеть. Узнаем, какой софт нужен, чтобы заставить её работать в прямом смысле слова за пять минут. Попутно запустим GPRS и ненадолго побываем в 2007 году. Традиционно будет много интересного.

https://habr.com/ru/companies/timeweb/articles/784300/

#timeweb_статьи #gsm #gprs #edge #sdr #arfcn #pcu #ggsn #sgsn #nokia #siemens #sony_ericsson #пакетные_данные #сотовая_сеть #опсос #csd #lte #4g #модемы #телефоны