ClairTheGinger, to ADHD
@ClairTheGinger@pkutalk.com avatar

Hello All!

I am Clair, 29 (nearly the big 3-0!) I have classical PKU.
My hobbies include reading, posting pictures of my black cat, Cosmic and playing xbox for too long ignoring all my basic bodily needs.

Recently diagnosed with #ADHD

I attempt to cook and bake #PKU friendly foods and I share any recipes I do perfect on my Instagram page. Ginger_PKU_Goddess.
Feel free to also add me there!

Open to all and any discussions regarding PKU, I hope to pass on the lessons I've learnt to others.

poconnor, to gardening
@poconnor@pkutalk.com avatar

Loganberries are a thornless cross between blackberries & raspberries.
Phe- free, tasty, and more productive than all my strawberry plants!

Harvest with a 2:1 ratio of loganberries to strawberries

jjunebrown, to random

PKU Mom Stories: 4 video interviews with my daughter Lillian who has #PKU, and me, a Geneticist and mom: https://www.youtube.com/playlist?list=PLAu_EBUaAh6aqM-FVduyWBCNRVyvv_RmN

pcublogue, to random
@pcublogue@pkutalk.com avatar

We have new friends on PKU Talk, it’s amazing! 🙌🏼

Interesting reading for new comers.

#phenylketonuria #pku #phenylcetonurie

https://phenylcetonurie.com/2023/01/27/phenylketonuria-lands-on-mastodon/

pcublogue, to random French
@pcublogue@pkutalk.com avatar

An excellent recipe for Phenylade GMP ULTRA, vanilla-flavoured!

Super recette pour le Phenylade GMP ULTRA à la vanille!

https://youtube.com/shorts/O_C-rFpMaX4?si=yz5nN6XSzApZxf3T

poconnor, to random
@poconnor@pkutalk.com avatar

Update on future for

From the NSPKU conference held May 2024 here are my notes from the sessions on , , , solute carrier 6, and oral options for /

https://buff.ly/4awqcJP

ClairTheGinger, to cooking
@ClairTheGinger@pkutalk.com avatar

It's salad time! 🥗😍

poconnor, to random
@poconnor@pkutalk.com avatar

Jogging with lettuce: a breakdown or something more sinister?

Residents were startled by the spectacle of a small wolf running next to a woman who was panting heavily & carrying an iceberg. 🥬

Inspired by her clan, the woman combined a daily dog walk with a return to running.

“The Allotment is a safe place & I needed to check on the plot. Lettuces were looking good & I fancied a salad for lunch.”

Authorities are seeking those who incited the incident.

pcublogue, to random French
@pcublogue@pkutalk.com avatar

Bleuets 🫐
Bananes 🍌
Avocats 🥑
Lait d’amande
Sirop d’érable
20g de protéines de formule
Une bonne façon de commencer la journée
😋 💪🏻👌🏻
*
Blueberries 🫐
Bananas 🍌
Avocado 🥑
Almond milk
Maple syrup
20g of formula protein
A good way to start the day
😋 💪🏻👌🏻

pcublogue, to random
@pcublogue@pkutalk.com avatar

Short night, it affects recovery and training. It is important to listen carefully to your body, set limits and promote recovery. It's good physically and psychologically. (After all, we must also navigate through other personal and professional responsibilities.) Take care of yourself!

caoimhin, to random
@caoimhin@mastodon.online avatar

The second time, almost routine now. 😎

(But look at these spots! The thing that actually should be routine, but almost never comes out like this. Now if only the results were as good as the spots... 🤪)

pcublogue, to random French
@pcublogue@pkutalk.com avatar

Petit rappel : Cette recette est délicieuse! 😋 Partagez-là!
Abonnez-vous à mon blogue pour voir d'autres recettes sur ! 😎

Reminder: This recipe is delicious! 😋 Share it!
Subscribe to my blog on to see more recipes! 😎

https://videos.pkutalk.com/w/iu55BdNGQANCwoFe2nu9Hg

ClairTheGinger, to random
@ClairTheGinger@pkutalk.com avatar

A 7/10 on the blood spot today.

pcublogue, to Health
@pcublogue@pkutalk.com avatar

It’s important to not overeat and looking at calories is a way to achieve that.

But when I take a look at the total amount of calories of just the PKU formulas, it’s a meal. (550 calories). 😒

The only way I found dealing with that is intermittent fasting (time restricted window), eating only 2 meals of food and carefully spread formulas during the day.

ClairTheGinger, to random
@ClairTheGinger@pkutalk.com avatar

Dieticans this week trying to keep on top of all the requests to add to prescription after the NSPKU Conference.

Image from Microsoft SwiftKey Keyboard

pcublogue, to random French
@pcublogue@pkutalk.com avatar

Beau début de journée. ☀️
📌 6000 pas jusqu’à maintenant
📌 Musculation
📌 Jeûne de 14 heures
📌 40g de protéines de formules pour briser le jeûne

Tout ça avant 11:00!

Motivation, motivation 😛💪🏻

poconnor, to india
@poconnor@pkutalk.com avatar

🇮🇳 Achievement unlocked. Just sold in ! 🥳 This book is now helping people in 13 countries.

Plus, if you are in the , you can now buy direct via Shopify. This helps you with 10% off, and helps me with more support (££!)

Thanks all, looking forward to seeing some of you at the this weekend

poconnor, to writing
@poconnor@pkutalk.com avatar

May newsletter from PigPen 🐷🖋️ , , &

🚨 costs in England & Wales go up!

📣 NSPKU conference & month

🧑‍🔬 Help with research

🥳 🥳 funded! Last chance to join us in the which closes on

https://buff.ly/3Wp8jJM

poconnor, to random
@poconnor@pkutalk.com avatar

Good morning @NSPKU Conference. Metabolic dietitian Suzanne Ford kicks us off with a look at the treasure trove of information on the NSPKU webpage.

the research page has open access to relevant studies, while the documents page is a rare resource of helpful information.

Plus, full page copies of the News & Views!

image/jpeg

poconnor, to random
@poconnor@pkutalk.com avatar
ClairTheGinger, to random
@ClairTheGinger@pkutalk.com avatar

One thing I always get stuck on when eating with is remembering to eat and remembering what I actually have in my cupboards!

So I have my fruit and snack bowls, all filled either prescription snacks, less than half a gram or completely protein free snacks, so I'm less likely to go for the snacks that are more interesting but heavier in protein (yoghurt, crisps etc)

ClairTheGinger, to random
@ClairTheGinger@pkutalk.com avatar

I've crocheted myself a pouch to put my microtabs in!

With added bonus of making myself a little counter so I can keep track of what tablets I'm on in the day. 💊⏰

#PKU

image/jpeg
image/jpeg

ClairTheGinger, to random
@ClairTheGinger@pkutalk.com avatar

I'M FINALLY BACK ON THE MICROTABS! 🎉🎉🎉

This feels like the end of a very long, hard nearly 3 year journey (started pre-contraception diet in 2021!) but I'm so damn proud of myself for getting through it, and to come out the otherside with a beautiful, happy and healthy baby.

No more carrying around extra water, powder everywhere, bag explosions, spilling on carpet, feeling sick from being too full, midnight forcing to get last one in, but just most importantly NO MORE DRINKS! 🥺

pcublogue, to mastodon French
@pcublogue@pkutalk.com avatar

, la seule place où je peux encore publier des liens. 🥹

Parlons de nachos.

https://phenylcetonurie.ca/2024/04/30/produit-des-nachos-faibles-en-proteines/

pcublogue,
@pcublogue@pkutalk.com avatar

#Mastodon, the only place I can still post links. 🥹

Let's talk about nachos.

#Phenylcetonurie #PKU

https://phenylcetonurie.ca/2024/05/01/product-low-protein-nachos/

pcublogue, to random French
@pcublogue@pkutalk.com avatar

Bon matin!
Une donnée extrêmement importante pour nous tous.

"Selon le rapport Meta's Widely Viewed Content, 95,2% des vues aux États-Unis au cours du quatrième trimestre de 2023 n'incluaient pas de lien vers une source extérieure à Facebook."

C'est exactement pour ça que je publie de moins en moins de lien vers mon blogue, vous ne les verriez pas de toute manière. Et c'est aussi pour ça que je vous encourage à vous abonnez directement au blogue. 😁

pcublogue,
@pcublogue@pkutalk.com avatar

Dans deux jours, c'est le mois de la sensibilisation à la phénylcétonurie qui commence. Ne comptez pas sur Facebook ou Instagram, abonnez-vous directement et passez le message! 💙

#Phénylcétonurie #Phenylketonuria #PKU

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