Parent stories

Share your story

Tell other families what life with PURA syndrome is like for you. A real person reads every story, and nothing is published until you’ve seen and approved it.

About you

First name optionalOnly your first name, please.

Your email So we can check the edit with you. Never published.

If we publish your story, show it as My first name Anonymous (“A parent in Wales”, for example)

You are…

Where in the UK? optional

Your story

A title optional

Your story At least a few sentences (50 characters or more). Please leave out surnames, schools, towns and anything else that could identify your child.

Your permission

Please tick all three. We can’t publish a story without them.

I give the PURA Family Directory permission to publish my story on purasyndrome.app, lightly edited for length and privacy. I’ll see the edit first, and I can ask for it to be removed at any time. My story doesn’t include my child’s surname, school, exact location, photos or other details that could identify them. I’m 18 or over. If this story is about or by someone under 18, I’m their parent or carer and I’m sending it for them.

Your story and email come privately to the parent who runs this site. We only use your email about your story, never for the newsletter. See our privacy notice.

Before you write

Write in your own words. A few paragraphs is perfect, and there’s no right or wrong way to tell it.
Use first names only, or stay anonymous. Please leave out surnames, schools, towns, hospitals, photos and anything else that could identify your child or family.
Share only what you’re happy for anyone to read. Stories may mention health, but please don’t include detailed medical records or medicine doses.
Be kind about other people, including professionals and services. We can’t publish complaints about named people or organisations.
Stories are personal experiences, not medical advice. We won’t publish anything that tells other families what treatment to choose.
If you’re under 18, ask a parent or carer to send your story for you.

What happens next

You send your story using our form. It comes privately to the parent who runs this site.
We read it and may edit it lightly for length and to remove anything that could identify you or your child.
We email you the edited version. Nothing is published until you say yes.
You can change your mind at any time, before or after it’s published. Just contact us and we’ll take it down.