By Kristi • Living with Classical PKU since infancy

Phenylketonuria. Now there’s a word that could win a spelling bee and scare a grown adult at the same time. As a young child, I was pretty proud that I could say that huge word. Well… almost. PKU, as most of us call it, has been part of my life since I was only a few days old.

Today, I’m 56 years old, and I’ve lived through a whole lot of ups, downs, questions, food labels, formula memories, and countless “Wait… can I eat that?” moments while growing up with Classical PKU.

I was born in 1970, which, in the world of PKU, sometimes feels like the Stone Age—with a little polyester, shag carpet, and confusion sprinkled in. Back then, the advice could swing from, “Yes, you can!” to, “No, you absolutely cannot!” when it came to diet, treatment, and trying to figure out what was fact and what was guesswork. Growing up with PKU in the 1970s and 1980s was a very different experience than it is today, but there are still parts of the journey that PKU families will understand no matter what decade they come from.

So, whether you have PKU, love someone who does, or you’re simply curious about how a little girl in the 1970s managed birthdays, school lunches, family dinners, and all the mystery foods hiding beneath casserole lids, I hope you’ll stick around.

I want this series to feel like we’re sitting around the kitchen table together—laughing a little, remembering a lot, and talking honestly about what it was like to grow up PKU-style. And I do mean honestly, because it wasn’t all sunshine and rose-colored glasses. There were hard days, confusing days, and plenty of moments that didn’t come with a neat little bow. But those parts of the story matter too.

Welcome to PKU Through the Decades. I’m glad you’re here.

In the weeks ahead, I’ll share memories of school lunches, family dinners, clinic visits, formula, friendships, and what it was really like growing up with PKU long before today’s treatments and low-protein foods.

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