I encourage fellow authors to explore speaking at local groups. They are a powerful platform not just for income, but for raising awareness and connecting with communities.
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.
Pauline O'Connor, author & advocate on PKU (phenylketonuria), brain injury & mental health. Books: Living With PKU & Living With Mild Brain Injury. Subscribe to the monthly newsletter.
Neuro Navigators help patients to understand the process of neurological rehabilitation. How to find them in London.
We wanted a space where adults with PKU felt able to hold an open discussion about managing PKU, and to collect data about our concerns in real time.
People with PKU need to prepare for the unexpected, here are my tips for travel. What are yours?
Large Neutral Amino Acid (LNAA) treatment for PKU This is a supplementary therapy for PKU which is in use in some European countries. It is particularly aimed at those with mild PKU
TW: discusses blood and needles. Not all lancets are equal! While no blood collection method is fun or painless, the type of lancet used does have a significant effect on pain and healing.
The blood spots from my first week on the pills seemed to show a drop. I admit that I began to get excited. That was a mistake, and one I’d encourage others to avoid.
Maintaining this level of control would be a tough ask. But I discovered that, when I thought I had been strict on my diet in the past, I really hadn’t.
A year after I went in for blood tests to determine if my PKU would respond, I finally took my first dose of sapropterin.