What is PKU?

Understanding Phenylketonuria

Phenylketonuria (PKU) is a rare, inherited metabolic disorder that affects the body’s ability to break down an amino acid called phenylalanine (Phe), which is found in most protein-containing foods and some artificial sweeteners. Without treatment, phenylalanine can build up in the blood and cause serious and irreversible health problems, including intellectual disabilities and neurological issues.

---

How Common Is PKU?

PKU affects approximately 1 in 10,000 to 15,000 newborns in the United States. All babies born in the U.S. are screened for PKU through the newborn screening test, typically within the first few days of life. Early diagnosis and treatment are key to preventing complications.

---

How Is PKU Managed?

PKU is a lifelong condition that requires strict dietary management starting in infancy. Treatment often includes:

• A very low-protein diet (limiting foods like meat, dairy, nuts, eggs, and bread)

• Special medical foods and formulas that provide protein without phenylalanine

• Regular blood tests to monitor Phe levels

• In some cases, prescription medications to help the body process phenylalanine

There is no cure for PKU, but with careful management, individuals with PKU can lead full, healthy lives.

---

The Daily Reality

Living with PKU means planning every meal, reading every label, and managing the high cost of medical food, formula, and insurance. It also means explaining a complex condition to teachers, friends, waitstaff, and even healthcare providers—often over and over again.

For families, the burden can be both emotional and financial. That’s why community, education, and support—like what the Alliance of PKU Families provides—are so critical.

---

Why Your Support Matters

By participating in Oscar’s Birdie Bash for PKU, you’re helping raise awareness and funds for a community that often goes unseen. You’re helping to support children who want to go to camp without worrying about what’s on the menu. You’re standing with families who work every day to give their loved ones the best chance at a healthy future.

Thank you for learning about PKU—and for helping us make a difference.