Damian J. · @nordicnefilim
8 followers · 59 posts · Server mcr.wtfAs a #pku 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
poconnor · @poconnor
20 followers · 240 posts · Server pkutalk.comTW: blood & needles
Tips for #PKU #BloodSpot
The #sapropterin trial meant daily #tests & I review different lancets & offer tips
TLDR: lancet has big effect on pain & healing as does choosing the site
#pku #bloodspot #sapropterin #tests #livingwithpku #lowprotein #adultpku #pcu #pkulife
poconnor · @poconnor
20 followers · 235 posts · Server pkutalk.comSneak peek for PKU Talk folks:
A new video review of #LivingWithPKU 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
poconnor · @poconnor
17 followers · 216 posts · Server pkutalk.com
Watch out folks - #Shrinkflation hitting a #PKU favourite.
Unknowingly paid the same for these in the online shop. Koko have reduced the tub from 500g to 400g with no price change.
also annoying as no longer 3phe per tub
#LivingWithPKU #PKUProblems #pkulife #pkuawareness #livingwithpku #pku #phenyketonuria #Pku
#shrinkflation #pku #livingwithpku #pkuproblems #pkulife #pkuawareness #phenyketonuria
poconnor · @poconnor
14 followers · 179 posts · Server pkutalk.com
Loganberries are a thornless cross between blackberries & raspberries.
Phe- free, tasty, and more productive than all my strawberry plants!
#livingwithpku #pku #pkulife #gardening #allotment
poconnor · @poconnor
14 followers · 174 posts · Server pkutalk.com
#Sapropterin blog series - with correct link!
Sapropterin trial, part 1: genetics & patience.
https://pigpen.page/sapropterin-trial-part-1/
#LivingWithPKU #AdultPKU #PKU #Kuvan #pkuawareness #PKUFitness #pkulife #pkuproblems #pkustrong
#sapropterin #livingwithpku #adultpku #pku #kuvan #pkuawareness #pkufitness #pkulife #pkuproblems #pkustrong
Soheb · @soheb
43 followers · 1060 posts · Server pkutalk.comI’ve been watching Asian cooking (East Asian) and they use MSG. I was wondering if anyone knew if MSG was free/allowed for PKU folks?
poconnor · @poconnor
11 followers · 86 posts · Server pkutalk.com
Whoop, there have been a few sales which means the NSPKU with new getting some funds.
Please spread the word to help boost sales and support throes amazing patient charity!
#LivingWithPKU #PKU #pkulife #Charity
Www.PigPen.page/books
#livingwithpku #pku #pkulife #charity
PKU Blog | PCU Blog :superpcu: · @pcublogue
9 followers · 129 posts · Server pkutalk.comFollow me at @pcublogue, you don’t want to miss this! 😎😃 Suivez-moi sur @pcublogue, vous je voulez pas manquer ça! #phenylketonuria #pku #phenylcetonurie #pkulife #pkucommunity #lowprotein #pkufood #pkurecipes #pkuwarrior #pkuawareness
#phenylketonuria #pku #phenylcetonurie #pkulife #pkucommunity #lowprotein #pkufood #pkurecipes #pkuwarrior #pkuawareness
Mark Maguire · @MarkMaguire
826 followers · 2799 posts · Server mastodon.ieI somehow missed Rare Disease Day yesterday, 28th February, which is a bit of a faux pas for a carrier of a rare disease gene (Classic PKU) and a dad to a kid with PKU. I wouldn’t have missed it on the Other Site. Isolated communities excel at using Twitter to cohere around spotlight days or months. But in good news today I’ve found two other Mastodonians using the PKU #. Our rare community just grew a little. #RareDisease #RareDiseaseDay #PKU #phenylketonuria #Metabolic #PKUlife
#RareDisease #rarediseaseday #PKU #phenylketonuria #metabolic #pkulife
Soheb · @soheb
20 followers · 157 posts · Server pkutalk.com
Soheb · @soheb
17 followers · 128 posts · Server pkutalk.com
Soheb · @soheb
10 followers · 28 posts · Server pkutalk.comSo now Cambrooke are having a word with the pharmacy to get their supplier and (hoping) they give them a serious (verbal) walloping for messing this up so badly.
I just want my damn supplements, man...
#pkulife #momedicalissuesmoproblems