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By Virginia Schuett, Editor, National PKU News
This section has been started following the Winter 1997 issue of National PKU News, the theme of which was "Off-Diet Young Adults: Lives in Danger." I hope to reach many young people with the message of the newsletter that high phenylalanine levels are not safe. Too many young adults with PKU have been lost to followup after stopping the diet many years ago when it was thought to be safe. Many of these young people have been out of touch with a PKU treatment program for years, if not decades. I hope that they, or perhaps a friend or relative, will eventually look up PKU on the Web and discover this section. I hope that PKU treatment centers will contact many of the families whose children they formerly followed in their programs, if they have not already done so. But there will be some who do not get the message. I believe that everyone needs to know of the new thinking about the considerable risks of high phenylalanine levels in order to make informed decisions about treatment.
I also hope that many young adults who find this section will write to me and let me know about their experiences off the diet. It is important for everyone to have as much information as possible. While there are many studies of off-diet persons reported in the scientific literature, all of the personal, unpublished stories are of great interest to me and to National PKU News. The more we know, the more informed other families and professionals can become.
If you have a story to share, a question to ask about restarting the diet, or a reaction to any part of this section on the dangers of high phenylalanine levels, please contact me at my e-mail address: schuett@pkunews.org, or write to:
National PKU News