Share Your Story

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.

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.

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.

What can you share?

Please share your short reflections or stories (400–800 words) about living with PKU. 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.

Here is an example from Soheb’s post on PigPen.page:

“Moving out can be pretty intimidating in itself, but when you have PKU, it can feel incredibly intimidating. Especially if, like myself, you have rarely cooked and had often relied on the help of others to help you manage your PKU (by the way, there is no shame in admitting that).”

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

How to share your story

• Simply paste your story (around 400–800 words) into this google form or via the contact link at www.pigpen.page/contact/ with subject line: "My PKU Story"
• I will know your name, you don’t have to share your name on the website.
• Include a short bio of 2–3 lines about where you are, if you follow treatment for PKU and if that is restricted diet, sapropterin, or another treatment.
• You can send a photo (landscape format preferred). Or I will suggest possible images for your story.

Tips for a great story Be yourself, write as if you’re talking to a friend. Focus on one main moment or theme rather than trying to tell everything at once.

What happens next?

Once your story is received, I’ll be in touch within two weeks. The story may be edited for clarity or length (with your approval) before publishing on PigPen.page. If we both agree that your story fits the purpose and values of PigPen.page, it may be published on the website. You’ll be credited as the author and can include links to your social or advocacy work.

The legal stuff

The full terms are on the downloadable PDF above. Briefly, by submitting content to PigPen.page, contributors agree that:

• Their submission may be edited for length, clarity, or tone, with their approval before publication.

• Final publication is at the discretion of the site owner (Pauline O’Connor).

• All opinions expressed in guest submissions are those of the individual contributor and do not necessarily reflect the views of PigPen.page or its affiliates.

• Contributors retain copyright to their words but grant PigPen.page a non-exclusive right to publish and promote the content on the website and social media channels.

• PigPen.page reserves the right to remove or modify content at any time for legal, ethical, or editorial reasons

Any questions? Get in touch

If you’re thinking about sharing your story but not sure where to start, just drop me a message. Let’s grow our community, one voice at a time.

Pauline