Managing a PKU diet is difficult and requires a support system.
For their entire lives, patients must count the amount of phenylalanine or protein in everything they eat, drink prescription formula daily to supplement their nutrition, and take frequent blood tests to make sure their diet is keeping their phenylalanine levels low enough to protect their brains and bodies from irreversible damage.
The Low Protein Food List for PKU, first published by National PKU News in 1981, contains the phenylalanine content for more than 6,000 foods. National PKU News launched HowMuchPhe.org in July 2014 to make that data accessible online. Since that time, we've added and updated hundreds of foods, and we're developing features to help PKU patients track their intake, blood levels, and growth and share that information easily with their dieticians.
With approximately 15,000 PKU patients in the U.S., we need the support of the larger community to stay healthy. Unlike other diseases such as diabetes that affect large populations, rare diseases like PKU struggle to attract governmental, commercial and philanthropic support.
How Much Phe strives to deliver easy to use and up-to-date services to the PKU community, but we can't do it without you. By becoming a supporter of How Much Phe, you're providing ongoing support to members of the community. Your support is essential to improve the food list, support new features, and expand the amino acid testing program.
National PKU News is a 501(c)(3) organization. 100% of your donation is tax deductible.