Teen Voices
Teen Voices: stories from teens living with ADPKD
PKD Bridge Teen Voices will be a moderated collection of short first-person essays by teenagers with ADPKD, or with ADPKD in their family, about what the condition is actually like during the teenage years. It is planned, not yet open. This page explains what it will be so you know what to expect.
Submissions are not open yet. Please do not send essays now. When Teen Voices opens, this page will explain how to take part and how consent works.
What it will be
Short essays, roughly 800 to 1,500 words, written by adolescents aged 13 to 18 who have ADPKD or a known family risk of it. The essays will be about lived experience: finding out about a diagnosis or a family risk, privacy and deciding who to tell, school and sports, friendships and family, worry about the future, and starting to take a bigger role in your own care. Essays will be published on this website.
Why stories
Reading how someone your own age handled a moment you recognize can make it feel less strange and less lonely. Research on young people with long-term health conditions describes storytelling as a promising way to support them, and a study with young people who had kidney transplants found that structured storytelling helped them reflect on their experiences and speak up in their own care. There is no dedicated collection of stories by teenagers with ADPKD. Teen Voices is meant to be that.
How it will work
- Written essays only. Teen Voices will not collect or publish photographs, audio, or video of contributors.
- No medical records. Contributors will not be asked for medical records, genetic test results, or detailed clinical information. Eligibility will be based on self-report and a parent or guardian’s confirmation.
- Consent and assent. For contributors under 18, written parental consent and the teen’s own assent will be required before anything is published. Contributors and their parents or guardians can decline or withdraw before publication.
- Your name, your choice. Contributors and their parents or guardians will choose how the essay is signed: full name, first name only, initials, a pen name, age and general region only, or anonymous. Editors may suggest a more private option if an essay could identify someone.
- Editorial review. Every essay will be reviewed to protect privacy and safety while keeping the writer’s voice. Editors will look for details that could identify the writer or other people, sensitive content, and medical statements that go beyond personal experience, which may be revised or removed. Where an essay makes medical claims, a clinician may be asked to review it. Changes will be worked out with the writer where possible, and the writer and their parent or guardian will have final approval of the version that is published.
What Teen Voices is not
Teen Voices is a moderated, consent-based space for sharing experiences. It is not a peer-support forum, a place to ask medical questions, or a crisis service. If an essay or a reader’s message raises concern about someone’s safety, PKD Bridge will point them to family, clinical, school, or crisis resources rather than handle it through the series.
When
Teen Voices will open after the consent process and review steps are in place. When it does, this page will say so and explain how to take part. Until then, the Resource Hub and the School Toolkit are open.