PKU Blog | PCU Blogue · @pcublogue
33 followers · 557 posts · Server pkutalk.com

"La santé est un état de complet bien-être physique, mental et social et ne consiste pas seulement en une absence de maladie ou d’infirmité." Le stress est l'un des problèmes les plus importants pour notre santé mentale et physique. Alors, bien que ce soit un dimanche pluvieux (dans mon coin du moins), c'est essentiel pour moi de prendre un moment pour relaxer tout en dégustant un petit café. 😌☕ Prenez soin de vous. 🙏

#phenylcetonurie #phenylketonuria #santementale #mentalhealth #pku

Last updated 1 year ago

PKU Blog | PCU Blogue · @pcublogue
33 followers · 555 posts · Server pkutalk.com

C'est grâce à @growingupwithpku 😄🙌🏼
Depuis le début de 2023, j'ai commencé à ne boire que des formules PCU à très faible teneur en glucides, principalement Glytactin BUILD et Phenylade GMP Mix-In, mais ces derniers temps, j'ai ajouté PKU Air dans le mélange, il est assez faible en glucides aussi.

Je souhaite un très bon week-end à toute la communauté PCU 😌

#shareyoursupplementsaturday #phenylcetonurie #phenylketonuria #pku

Last updated 1 year ago

PKU Blog | PCU Blogue · @pcublogue
33 followers · 555 posts · Server pkutalk.com

It’s thanks to @growingupwithpku 😄🙌🏼
Since the beginning of 2023 I’ve started drinking only super low carbs PKU formulas, mainly Glytactin BUILD and Phenylade GMP Mix-In, but lately I added PKU Air in the mix, it’s pretty low in carbs as well.
Wishing a very good weekend to all the PKU community 😌

#shareyoursupplementsaturday #phenylketonuria #phenylcetonurie #pku

Last updated 1 year ago

Soheb · @soheb
75 followers · 1818 posts · Server pkutalk.com

It's so great to see the seasonal NSPKU News & Views magazine arriving at my doorstep!

Full of little info to catch me up on the PKU world (at least in the UK) as well as as some great PKU recipes!!

If you are in the UK and you'd like this magazine, subscribe to the NSPKU membership here: nspku.org/membership/

#nspku #pku #newsandviews

Last updated 1 year ago

PKU Blog | PCU Blogue · @pcublogue
33 followers · 547 posts · Server pkutalk.com

Le souper ce soir 😋
Riz de konjac avec piment vert et oignon réduits en purée accompagné d’asperges rôties dans l’huile. 👌🏻
*
Dinner tonight 😋. 😋
Konjac rice with mashed green pepper and onion accompanied by asparagus roasted in oil. 👌🏻

#phenylketonuria #pku #phenylcetonurie

Last updated 1 year ago

poconnor · @poconnor
23 followers · 275 posts · Server pkutalk.com

I had 1 g of protein left when I found the Vegan Raspberry Swirl Magnum in the corner shop.

Now, I have no protein left today

#win #pku

Last updated 1 year ago

PKU Blog | PCU Blogue · @pcublogue
33 followers · 546 posts · Server pkutalk.com

Un de mes repas préférés, mais rapide et facile à faire! Préparez les pâtes, faites revenir les légumes dans le poêlon, ajoutez les pâtes, ajoutez la sauce et bam. C’est déjà fini.
*
One of my favorite meals, but quick and easy to make! Prepare the pasta, fry the vegetables in the skillet, add the pasta, add the sauce and bam. It's already over.

#lowprotein #pku #phenylcetonurie #phenylketonuria #pkufood #pkurecipe

Last updated 1 year ago

poconnor · @poconnor
23 followers · 264 posts · Server pkutalk.com

📬 September at PigPen 🐞 PKU, brain injury, mental health.

➡️Probiotic for PKU goes to trial

➡️Join in Second Hand September

➡️ plus a recipe for the courgette glut.

mailchi.mp/605aa49a359f/pigpen

or subscribe:mailchi.mp/be6eb020b0cf/signup

#livingwithpku #livingwithmildbraininjury #pku #concussion #tbi

Last updated 1 year ago

Soheb · @soheb
74 followers · 1762 posts · Server pkutalk.com

Hey all! @poconnor has released a new newsletter, and it features her happy little pupper as well as news, news, and some new fancy to try!

Give it a read here: mailchi.mp/605aa49a359f/pigpen - and don't forget to subscribe!!

#pku #braininjury #recipes

Last updated 1 year ago

Damian J. · @nordicnefilim
8 followers · 59 posts · Server mcr.wtf

As a child, I started eating meat, under controlled circumstances, aged 15. By 18, I had returned to a normal diet.

I'm now careering toward 50 and have been off-diet for over 30 years.

Asking fellow PKU-ers if anyone has any recommendations for guidance on returning to a strict low-protein diet in later life?



#pku #phenylketonuria #pkulife #pkutalk

Last updated 1 year ago

poconnor · @poconnor
21 followers · 262 posts · Server pkutalk.com

What affects your PKU supplement choice?

#livingwithpku #pku #pcu

Last updated 1 year ago

poconnor · @poconnor
21 followers · 262 posts · Server pkutalk.com

I'm thinking about supplements, our special drink, medicine... What ever you call it!

I'm changing to a new type & wondering what affects your choice of supplement. Is it just the taste, or how easy it is to get, to take, to carry, etc.?

#pku #livingwithpku #lowprotein #raredisease #pkuproblems #phenylketonuria

Last updated 1 year ago

Soheb · @soheb
72 followers · 1638 posts · Server pkutalk.com

Just done the blood spot. Very happy with the blood spot circles!

#pku #phenylketonuria #phenylalanine #bloodspot #bloodspots #blood

Last updated 1 year ago

poconnor · @poconnor
21 followers · 247 posts · Server pkutalk.com

I did it! My first video content on

It is one of those psychological things that I’ve been getting over, particularly since I can never be bothered with make up! So here it is what is PKU?


#pku #livingwithpku #video #bekind #fckitfriday

Last updated 1 year ago

poconnor · @poconnor
21 followers · 246 posts · Server pkutalk.com

Supplement, medicine, special drink... I'm thinking about supplements this month.

First up, looking at if we actually manage all of our supplement.

If you have PKU, do you take your supplement every day?

#pku #livingwithpku #adultpku #pcu #pkuproblems #pkucommunity #lowprotein

Last updated 1 year ago

poconnor · @poconnor
21 followers · 242 posts · Server pkutalk.com

❓ ❓ Questions:❓ ❓
How common is ?
How is it inherited?
Why are some people allowed more than others?
Why does only work for some?

⬇️ ⬇️ Answers!⬇️ ⬇️
pigpen.page/the-genetics-of-pk

#pku #protein #sapropterin #livingwithpku #adultpku

Last updated 1 year ago

poconnor · @poconnor
20 followers · 240 posts · Server pkutalk.com

TW: blood & needles

Tips for

The trial meant daily & I review different lancets & offer tips

TLDR: lancet has big effect on pain & healing as does choosing the site

pigpen.page/tips-for-blood-spo

#pku #bloodspot #sapropterin #tests #livingwithpku #lowprotein #adultpku #pcu #pkulife

Last updated 1 year ago

Denise Hofman · @dlhofman
3 followers · 6 posts · Server pkutalk.com

In case anyone is looking for recipe ideas: made this w/ gluten-free tortillas (low in protein) yesterday:

bunchbunchbunch.com/recipes/si

#pku #pkucooking #pkurecipes

Last updated 1 year ago

Aybara19 · @Aybara19
2 followers · 4 posts · Server pkutalk.com

This isn't immediately obvious from the site. But members can get ~40% subsidy towards this year's ESPKU conference. Book as normal then get in contact with your order number. Full details here nspku.org/37th-e-s-pku-confere
This may help some of those who were on the fence about going because of the cost.

#nspku #pku

Last updated 1 year ago

poconnor · @poconnor
20 followers · 235 posts · Server pkutalk.com

Sneak peek for PKU Talk folks:

A new video review of featuring our very own @jjunebrown

Thank you so much for this!

P.S if annotations has a good captioning to, please let me know!

#livingwithpku #pku #pkuawareness #pkulife #pcu

Last updated 1 year ago