Share Your Story

For Rare disease day 2026, people with PKU are sharing their story on PigPen.

Clair's Story: Caring for a Child Without Phenylketonuria

Clair discusses parenting with PKU, when your child does not have PKU - and the interesting challenges she has faced.

Parenting with PKU: Raising a child who doesn’t have Phenylketonuria

The day my baby was born, as well as all the emotions that I felt on finally getting to meet my baby girl, I was so relieved that I had done it. All that hard work I put into my diet for over 2 years had been worth it, she was perfect!

PigPen | Pauline O'ConnorPauline

Ifan’s Story: Masculinity and the Weight of Expectation

Ifan shares his experience navigating the manosphere, and what that meant for his PKU and mental health.

PKU, Protein, mental health: Navigating Masculinity’s Pressure

I’ve never struggled too much with my diet... What has affected me is the mental state the diet puts me in. The constant weighing and measure of every option before me. The anxiety of it.

PigPen | Pauline O'ConnorPauline

Soheb’s Stories: Moving with PKU, and getting back to the gym

Soheb wrote a series of blogs for PigPen - looking at moving home with PKU, and getting into the gym.

Moving out can be intimidating, more so if you have PKU. Help is at hand

Moving out can be pretty intimidating in itself, but when you have PKU, it can feel incredibly intimidating...If you are consideing moving out into a new place, there are a few things you will need to think about carefully.

PigPen | Pauline O'ConnorPauline

An invitation to Share Your PKU Story on PigPen.page

I believe that every story matters. If you live with PKU or care for someone who does, your voice can help others feel seen, supported, and inspired.

Why your story matters

Every story adds to our shared understanding of PKU. By contributing, you’ll help others feel less alone and show that PKU life can be full, varied, and hopeful.

You don’t have to be a writer.

I’d love to read your honest voice and real experience. Stories might cover diagnosis, food, travel, family life, clinics, school…Whatever part of your PKU journey you’d like to share.

If you’d like to share your experience — whether funny, heartfelt, or practical — on my blog, please get in touch. The post can be anonymous, we don’t have to share your name.

Share your PKU Story and find your Low Protein community

Every story adds to our shared understanding of PKU. The post can be anonymous, we don’t have to share your name. Join our community and share your story today

PigPen | Pauline O'ConnorPauline

Big Ebook Sale

I’m excited to announce that my books will be available as part of a promotion on Smashwords celebrating Read an Ebook Week from March 1 to March 7. Now’s the perfect time to take advantage of great deals to load up on new ebooks, mine included!

You will find the promo here starting on March 1, so save the link:

Smashwords – Sitewide Sale

Spread the word

If you find value in my newsletters, please share them. You can find my books at all major retailers. Your support means a lot, and your feedback shapes what comes next. Do get in touch!

Cheers,

Pauline

Newsletter #45