Join Recounting PKU

  • Thank you for your interest in adding your story to Recounting PKU. Since PKU is so strongly (and thankfully so!) associated with newborn screening, people forget that no one grows out of having PKU. This project is designed to raise awareness of PKU as something that is lifelong, and presents different challenges--and opportunities--as you grow older.

    There are three steps to sharing your story:

    1. Provide your name and email address. We will verify that your email is valid before the story can be published.
    2. Write your narrative about what having PKU means to you. You can compose it offline and paste it into this site, or write online. You can save your entry for later and come back to it (but don't wait too long!)
    3. Submit any photos, videos, or documents you'd like to include with your story, and agree to the terms and conditions of the project.

    PKU knows no boundaries and neither do your stories. This is an international project. You can submit a story in your own language, about your experience wherever you live.

    We will start publishing and featuring stories on May 1, 2018 for PKU Awareness month. Your first name, country, and year of birth (if you desire) will be published along with your story, but your last name/contact info will not published. Links to the stories on this site may be featured on PKU News' Facebook page.

    Thank you for being a part of this project!

  • This will help put your story into context, but you can choose not to display it publicly.
  • It may help people understand the context of PKU treatment when you were growing up.

  • Recounting PKU was founded as a place for adults with PKU to share their stories. You don't have to write about triumphs, or struggles, or whatever you think people want to hear. The only requirement is that it be authentic (and keep it clean; it's for all audiences). You can write whatever you want -- this is your story. But here are some questions to consider if you're not sure what you'd like to say. Answer one, or all, or none of them!

    • What does having PKU mean to you?
    • What was it like for you growing up with PKU?
    • What's the hardest thing about having PKU?
    • What's the best thing about having PKU?
    • Do you have any siblings with PKU? How did having PKU affect relationships in your family?
    • If you could tell your 15-year-old self something about living with PKU, what would it be?
    • What do you wish people understood about PKU?
    • What's your earliest memory about having PKU?
    • What do you remember about the first time you met someone else with PKU? What did that mean to you?
    • What's the funniest thing about having PKU?
  • This needn't be just a profile picture -- it might be pictures of you with your formula, or with your favorite PKU meal, or something else that evokes life with PKU. I could be hand-scribble pages from a diet journal or other things that are significant to you and your life with PKU.
    Drop files here or
  • I give National PKU News permission to share my contact information with any parties interested in providing support or services to adults with PKU. (This is not required to submit your story or participate in Recounting PKU).
  • I agree that the story I have submitted is my own. I agree that I personally own the copyrights to the photos, videos, and documents I have uploaded (if applicable) and release National PKU News from any liabilities resulting from the publication of my story or these photos, documents, or videos. I consent to have National PKU News edit the story I have submitted for length, grammar, and content, and understand that I have the right to revoke publication of this story at any point by emailing recountingpku@pkunews.org.
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