NSPKU - Phenylketonuria Future Potential Therapies

https://videos.pkutalk.com/videos/watch/e7786e17-a9c4-4bce-859f-7f22cad8e9cc

Done the blood test today! Will be interesting to see what the results are!

#blood #bloodtest #pku #phenylketonuria #phenylcetonurie #phenylalanine

For folks who have used PKU Calculator - I've been thinking about winding down the diet management side of the app for quite some time now, as well as winding down iOS and Android apps.

I'm super proud of said apps, but the truth of the matter is that these apps do take a long time out of my life to maintain. If I had a team of developers and testers, then this would be easy. That, and Apple/Google bureaucracy has killed the fun for me.

#PKUCalculator #pku #phenylketonuria #phenylalanine

So glad I managed to sneak some of this home from the conference. It is delicious!

I just wish there was pku food delivery or something!

#Phenylketonurie #phenylalanine #phenylketonuria #pku #ClassicPKU

I forgot to share the good news!

The last result was 413umol/L - looks like creating had little effect on my phe levels. (Well, my levels before were 300, so could be? But before that it was 481 and 556, so… 🤷‍♀️)

#pku #phenylkeotnuria #phenylalanine #Phénycétonurie #phenylcetonurie #creatine #health #blood

https://pkutalk.com/@soheb/112226425483912059

Did my blood test today... a bit lacking than usual. Hopefully I won't need to re-do them.

#bloodspot #blood #bloodtest #phenylketonuria #phenylcetonurie #phenylalanine #lowprotein #lowproteindiet #nhs

Didn’t do them last week as I had a cold, so didn’t see the point of being scolded for high phe levels which I had no control over.

#bloodspot #blood #bloodtest #phenylketonuria #phenylcetonurie #phenylalanine #lowprotein #lowproteindiet #nhs

I really loved watching this presentation given by our very own @pcublogue! It's about his experiences with PKU. Goes to show no matter the language/nationality/culture difference, there are some things we all share the same, and @pcublogue put it brilliantly! Well worth a watch:

https://videos.pkutalk.com/w/343pZ7gFhvhrN39QGAbQmH?subtitle=en

#Phenylketonuria #phenylcetonurie #Phenylalanine #PKU #ClassicPKU #LivingWithPKU #LowProtein #LowProteinDiet

Made myself some stir fry noodles the other day!

It was actually quite nice!

#PKU #ClassicalPKU #LivingWithPKU #Phenylketonuria #Phenylalanine #phenylcetonurie #LowProtein #LowProteinDiet