National PKU News
Last update: August 2006
For Students Writing Papers
By Virginia Schuett, MS, RD, Director and Editor, National PKU News
Since the National PKU News Web site was started in January 1996, I have
received many inquiries via e-mail from students writing papers on PKU. Though
I am always happy for interest in PKU, I am sorry to say I unable to respond to
your questions (unless you have a connection to PKU through a diagnosed family
member). National PKU News has more than 2000 subscribers; since I am
the sole employee of the organization, responding to their questions and needs
has to be my first priority.
If you need information about PKU:
The What is Phenylketonuria?
web site has an outstanding segment on PKU, with animated graphics and video
clips describing all aspects of PKU from genetics to screening to treatment. It
is from the Dolan DNA Learning Center and the PKU segment is part of their Your
Genes, Your Health series.
I regret to say that National PKU News has no literature of any kind to give
away for student use; however, you may use the order forms on this Web site to
purchase back issues of the newsletter or other
publications offered by National PKU News such as the low-protein
food list or cookbooks.
Check out all of the information at this Web site.
Description of PKU site gives a very erudite treatise heavily focused
on molecular genetic aspects. It contains a large number of references. The
site at McGill University in Canada
contains excellent basic information in more easily understandable language.
There are many other scientific papers on a huge array of specific topics,
which you can find through doing a Medline or other search of the medical
literature looking for specific PKU-related topics.
You can also purchase a limited number of articles for lay persons and from the
scientific literature from Children’s PKU Network: 1520 State St. Suite
240, San Diego, CA 92101 (tel: 619-233-3202).
Another complete reference on PKU (and other metabolic diseases) is a book, The
Metabolic and Molecular Basis of Inherited Disease, (7th edition is the
latest, with 3 volumes by Scriver, Beaudet, Sly and Valle). This is available
in medical libraries. It contains a very detailed and quite technical
description of PKU. (Earlier editions just have the title The Metabolic Basis of
Inherited Disease, by Stanbury, et. al.) There are many references
If you need good, basic non-technical information about PKU, written at
the level of a lay person, a publication called "Living with PKU"
(designed for parents) could be helpful. This booklet is published by
Mead Johnson Nutritionals. You can contact a local Mead Johnson
representative to obtain a copy. (I cannot guarantee they will be willing to
give one to a student, however.)
Good luck with your paper or project on PKU!