Supplement, 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
❓ ❓ 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
TW: 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
A 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
❓ ❓ 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
Easy #PKU Lunch ideas!
2g protein frm the new @Genius Ciabatta, filled with cucumber, pickle, & protein-free cheese (@Violife)
Ciabatta found @Ocado
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/
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
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 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
poconnor
