There was a great panel talk by @poconnor about living with PKU and sapropterin.
One of the questions was "are you doing well with phe levels", and one of the points was that how life changes do have a severe impact on phe levels.
As someone who moved house quite recently AND had a job change, I am proof that big life changes as well as changes to routine absolutely do mess up phe levels.
An amazing review for my book, which has made my day. And what an awesome person, getting a book to try and understand their niece’s life a little more.
If you want to make someone’s day, review their book! Happy Dance
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:
Many thanks to all who attended our session @ESPKU conference . Our interactive workshop on the older adult patient experience: "Starting the Conversation: a panel for adults with PKU, by adults with PKU." was a hit!
Couldn't have done it without @soheb@GirlGreenDress@NSPKU
Will have data results asap
What is Large Neutral Amino Acid (LNAA) treatment?
this is an additional treatment for #PKU which is used in certain European nations. In my book, "Living with PKU," I discussed LNAA and you'll find an excerpt on my blog: https://pigpen.page/what-is-lnaa/
Boil frozen mogo chips for 15-20 mins until mogo chips are soft in the center (like potato, you got to poke them with a butter knife to see if it's properly cooked or not)