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My work

I write about PKU, brain injury, and mental health — and I help others tell their stories too. Below is a selection of my published work, my reader and editorial services, and details of past speaking engagements.
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Podcasts

Newsletters:

As well as publishing here on PigPen, I publish two month updates on LinkedIn:

  • Living Rare covering PKU news, research, and lived experience.
  • Mind Matters with curated insights on brain injury, resilience, and mental wellbeing.

YouTube: PaulineAuthor

  • Excerpts from my books
  • Recipes for Low Protein foods
  • Video walk-throughs
Pauline O’Connor, Author & Advocate
Pauline O’Connor – Author & Advocate | PKU, Brain Health & Storytelling Hullo there, I’m an author and advocate living with PKU. This channel brings together books, advocacy, and community and builds on my work at www.PigPen.page 🔔 Subscribe to join a community built on shared experience. 📚 What you’ll find here: - Excerpts from my books: Living with PKU and Living with mild brain injury - Low Protein recipe ideas and video walk-throughs - Conversations about PKU, rare conditions, and low‑protein living - Insights on rebuilding a life after brain injury. 🌐 Visit PigPen.page for blogs, books, and updates.
YouTube

Other online & printed works

© Pauline O’Connor 2021: NSPKU News & Views Issue 168 Winter 2021
"Loved it! Very wise words as we go into another difficult winter xx" — NSPKU News & Views Issue 168, Winter 2021

Alongside my published works, I've written for businesses in both the drinks and health sectors. I also regularly volunteer my creation, editing, and proofing services to charities (see Editorial services, below).

Advocacy

I advocate for people with PKU, brain injury, and rare disease through patient and public involvement (PPI) in research, patient representation, and community work.

"Pauline delivered a fascinating and insightful talk... made a very positive impact on the audience."

Research involvement (PPI)

  • University of Hertfordshire: Public Involvement in Research Group (PIRG), member
  • NHS Central and South Genomics Service: PPI member
  • NHS (St Thomas') — PKU research advisory group

Patient representation

  • ESPKU: Workshop chair at 2023 conference
  • NSPKU: Conference Presenter & Panel chair at mutiple events; Magazine content production and assistance, 2014 - ongoing.
  • Nutricia — patient board member, 2016 - 2021
"Speaking engagements — past talks and feedback"

Editorial services

I offer reader and content services to authors, businesses, patient groups, charities, and specialised food companies. For specialist reader and editorial help from a published author, contact me to discuss your needs.

With over 20 years of experience in the drinks trade, and personal experience of chronic illness and brain injury, I bring a unique perspective to your work.

Specialist beta reader & content creation

  • Drinks trade: wineries, viticulture, sake production, judging, tasting events, global work experience.
  • Health care: lived experience of brain injury, inherited metabolic conditions & rare disease, patient advocacy with experiences of health care in NZ and UK.
  • Locations: twenty years in both New Zealand and London (UK), work experience in the US (Oregon), and extensive travel for both wine, sake, and fun!

I also regularly volunteer my creation, editing, and proofing services to charities. For specialist reader and editorial help from a published author, contact me to discuss your needs.

Speaking

I've given talks on living with brain injury, PKU, and patient advocacy at events including the U3A, The WI, and other groups. I'm happy to consider speaker invitations, please contact me to discuss.

"One of our most experienced and active members told me he would put you in the top five speakers we've ever had!" U3A group coordinator

Talks include:

  • Brain injury and Recovery — how women are different Pauline discusses how brain injury presents differently in women, and what that means for society.
  • Living with Mild Brain Injury Pauline discusses the prevalence of brain injury in society and the small everyday things you can do to help.
  • PKU and Chronic illness Living with Chronic Illness — lessons learned from living with a rare metabolic disorder.

Fees: In person: £50 up to 1hour + travel (negotiable). Online £40 up to 1 hr
Please note: these fees support my charity and patient group work.

Patient groups (travel expenses only) As part of her commitment to assisting brain injury survivors and advocating for others with PKU, Pauline collaborates with organisations like the NSPKU, ESPKU, and Headway in their patient programmes.

Watch on Vimeo: Online presentation tailored to NELE, August 2021

Get in touch

The fastest way to reach me is via the contact form.