Liz Twist MP spoke to the conference in her role as Chair of the All Party Parliamentary Group (APPG) for PKU. She began by extolling the difference which Sapropterin makes for those who respond, but she also acknowledged the need to work for those who do not respond.
Polly is the editor of PigPen.Page. She set up this website to write about her personal experiences with brain injuries, PKU and to document her forays into the world of writing.
Welcome to PigPen! A hub for recipes and articles on PKU; information on living with brain injury; and writing on mental health. Here are a few ideas to get you started:
Vitaflo Sphere have two new, and frankly delicious, flavours in their supplement range. I tried all five flavours in one day and took notes for you.
No one’s PKU is quite the same, yet we can support each other. I don’t pretend to have all the answers, but this book contains what I know from forty years of Living With PKU
A reliable recipe for making PKU bread in a breadmaker. I've used this recipe for years, and it consistently makes a soft, white loaf. Plus, how to avoid that hard ring of flour and using psyllium husks.
“This book will enlighten brain injury survivors and affected families
We are all aware that it is good to be kind. New research has found that, as well as benefiting to the person you are being kind to, offering an act of kindness has benefits for you too.
Dog sitting has helped me realised how quickly we can adapt. Change may happen quickly or slowly, but we can adapt to either.
June was a busy month for the PKU family as we ran, cycled, walked, planked, push-upped our way towards International PKU day.
Dizziness can be hidden behind other injuries at first and can even interfere with treatments. When you are finally up and moving around, dizziness can be very isolating.