PKU News is pleased to announce the founding of RECOUNTING PKU, a living history project for adults with PKU. We invite anyone 18 and older with PKU to join us and share their experiences—the good, the bad, and the ugly—of living with PKU.
PKU is strongly associated with children for several reasons:
- newborn screening revolutionized the detection and treatment of PKU;
- for many years medical doctrine approached it as a children’s disease: diet for life didn’t become the standard until the 1990s;
- parents of children with PKU are very vocal and active: by the time you’ve been living with PKU for 18 or more years, you’re defining yourself by a lot more than a diagnosis.
But we know that adults with PKU have stories to tell, and experiences to share that are important in their own right. RECOUNTING PKU is a chance to share those stories. Your contributions can include text, photos, and even video.
Please sign up here to be notified when the project launches in the coming weeks. We hope that many of you will participate, and look forward to sharing your stories beginning May 1 for National PKU Awareness Month.