Pauline O'Connor

Pauline O'Connor

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.

Speaking at the WI

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.

Welcome, start here

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

Neuro Navigators help patients to understand the process of neurological rehabilitation. How to find them in London.

Starting the Conversation

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.

Emergency travel with PKU

People with PKU need to prepare for the unexpected, here are my tips for travel. What are yours?

What is LNAA?

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

Tips for blood spots

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.

Sapropterin trial, part 3: the trial

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.

Sapropterin trial, part 2: Baseline testing

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.

Sapropterin trial, part 1: genetics & patience.

A year after I went in for blood tests to determine if my PKU would respond, I finally took my first dose of sapropterin.