poconnor · @poconnor
21 followers · 246 posts · Server pkutalk.comSupplement, medicine, special drink... I'm thinking about #PKU 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?
#LivingWithPKU #AdultPKU #PCU #PKUProblems #PKUCommunity #LowProtein
#pku #livingwithpku #adultpku #pcu #pkuproblems #pkucommunity #lowprotein
poconnor · @poconnor
21 followers · 242 posts · Server pkutalk.com
❓ ❓ Questions:❓ ❓
How common is #PKU?
How is it inherited?
Why are some people allowed more #Protein than others?
Why does #sapropterin only work for some?
⬇️ ⬇️ Answers!⬇️ ⬇️
https://pigpen.page/the-genetics-of-pku/
#LivingWithPKU #AdultPKU
#pku #protein #sapropterin #livingwithpku #adultpku
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
17 followers · 215 posts · Server pkutalk.comA year after the genetics testing I was able to start trialling #Sapropterin (#Kuvan)
I had a poignant moment when I realised I was about to try my first treatment beyond restricted-diet therapy in over 40 years of #LivingWithPKU
#sapropterin #kuvan #livingwithpku #pku #adultpku
poconnor · @poconnor
16 followers · 209 posts · Server pkutalk.com❓ ❓ Questions:❓ ❓
How common is #PKU?
How is it inherited?
Why are some people allowed more #Protein than others?
Why does #sapropterin only work for some?
⬇️ ⬇️ Answers!⬇️ ⬇️
https://pigpen.page/the-genetics-of-pku/
#LivingWithPKU #AdultPKU
#pku #protein #sapropterin #livingwithpku #adultpku
poconnor · @poconnor
16 followers · 209 posts · Server pkutalk.com
Easy #PKU Lunch ideas!
2g protein frm the new @Genius Ciabatta, filled with cucumber, pickle, & protein-free cheese (@Violife)
Ciabatta found @Ocado
#pku #livingwithpku #adultpku #lowprotein
poconnor · @poconnor
15 followers · 197 posts · Server pkutalk.com
Update on the #Sapropterin (#Kuvan)Blog series:
Sapropterin trial, part 2: Baseline testing discusses the requirements of the baseline control testing before starting the medication, and looks at the interesting lessons learned.
https://pigpen.page/sapropterin-trial-part-2-baseline-testing/
#sapropterin #kuvan #livingwithpku #pku #adultpku
poconnor · @poconnor
15 followers · 182 posts · Server pkutalk.com
Monthly Newsletter out now: July at PigPen 🍒 #PKU, #BrainInjury, mental health.
- #Sapropterin Trials
- a visit to the House of Lords
- what does brain injury feel like, by @michelle_munt
https://mailchi.mp/8e00ac44b80f/pigpen-newsletter-pku-brain-injury-and-mental-health-9111544
#LivingWithPKU #LivingWithMildBrainInjury #Concussion #AdultPKU
#pku #braininjury #sapropterin #livingwithpku #livingwithmildbraininjury #concussion #adultpku
poconnor · @poconnor
15 followers · 182 posts · Server pkutalk.comUpdate on the #Sapropterin (#Kuvan)Blog series:
Sapropterin trial, part 2: Baseline testing discusses the requirements of the baseline control testing before starting the medication, and looks at the interesting lessons learned.
https://pigpen.page/sapropterin-trial-part-2-baseline-testing/
#sapropterin #kuvan #livingwithpku #pku #adultpku
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
poconnor · @poconnor
13 followers · 156 posts · Server pkutalk.com
Happy #Book Birthday
#LivingWithPKU hit NUMBER 1 in the Genetics hottest releases list. It also made the top 6 bestsellers list, up there with Richard Dawkins and Adam Rutherford.
#PKU #AdultPKU #BookBirthday
https://pigpen.page/happy-birthday-to-living-with-pku/
#book #livingwithpku #pku #adultpku #bookbirthday
poconnor · @poconnor
13 followers · 155 posts · Server pkutalk.com
❓ ❓ Questions:❓ ❓
How common is #PKU?
How is it inherited?
Why are some people allowed more #Protein than others?
Why does #sapropterin only work for some?
⬇️ ⬇️ Answers!⬇️ ⬇️
https://pigpen.page/the-genetics-of-pku/
#LivingWithPKU #AdultPKU
#pku #protein #sapropterin #livingwithpku #adultpku
poconnor · @poconnor
13 followers · 115 posts · Server pkutalk.com
Easy Heatwave recipe for #PKU. No cooking!
Something a bit different for hot weather and PKU meals. I came across this as a recipe for a ‘no-cook’ soup but in both temperature and texture it is best described as a smoothie.
Quick & easy, without standing over a hot stove 😁
https://pigpen.page/cucumber-and-avocado-smoothie/
#LivingWithPKU #AdultPKU #Heatwave
#pku #livingwithpku #adultpku #heatwave
poconnor · @poconnor
12 followers · 112 posts · Server pkutalk.comEasy Heatwave recipe for #PKU. No cooking!
This fennel and orange salad can be made phe-free, low-protein, or add protein as needed.
Quick & easy, without standing over a hot stove 😁
#pku #livingwithpku #adultpku #heatwave
poconnor · @poconnor
12 followers · 111 posts · Server pkutalk.com
Easy Heatwave recipe for #PKU. No cooking!
This fennel and 'cheese' salad can be made phe-free, low-protein, or add protein as needed. Quick & easy, without standing over a hot stove 😁
#pku #livingwithpku #adultpku #heatwave
poconnor · @poconnor
12 followers · 103 posts · Server pkutalk.com
Easy #PKU Lunch ideas!
2g protein frm the new @Genius Ciabatta, filled with cucumber, pickle, & protein-free cheese (@Violife)
Ciabatta found @Ocado
#pku #livingwithpku #adultpku #lowprotein
poconnor · @poconnor
10 followers · 44 posts · Server pkutalk.com
Celebrated a birthday recently with a #PKU-friendly
protein-free carrot cake!
It went so quickly I had to make more 😋
poconnor · @poconnor
10 followers · 21 posts · Server pkutalk.com
Researchers are trying to learn more about what matters most to people with PKU as they get older...
If you have #PKU, are 30 years of age or above, currently live in Australia, Canada, Sweden, The Netherlands, UK, or USA you can take part - email in pic
#LivingWithPKU #AdultPKU