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Group Description

This is a support group for Maternal PKU. Any woman who is of childbearing age may join this group for education and support and advice. We also invite dietitians and physicians who work with PKU pregnant women to join this list to help us answer questions about the pregnant woman's changing PKU Diet. Any parent who has a daughter with PKU is also invited to join to learn more about Maternal PKU and help their daughter understand about her future reproductive health. We hope to be able to help support eachother and learn from eachother's experiences.
I have PKU- I was diagnosed with it at two weeks of age in 1979. Since the time I was diagnosed, so many changes have been made in the medical world in regards to the treatment and understanding of PKU. The most important discovery was that women with PKU who were not on diet were being found to have babies with microcephaly, hypo-plastic left heart, and many other defects from a mother's non PKU diet. We now know that a person diagnosed with PKU must stay on the diet for life to prevent any neurological disorders. Especially women of the childbearing age who may become pregnant. They must keep their levels between 2-6 mg before and throughout pregnancy to prevent any defects to the baby. We look forward to meeting you and learning from you and your experiences and hopefully to meet some new people and make lifelong friendships.
Any advice given here is not a substitute for medical advice and should not replace care given by your dietitian or doctor. We are not doctors but just women who have had babies while dealing with our own PKU.
This is a non-medical support forum and we encourage each woman to be an informed consumer of medical services for herself and her baby. We believe that women are smart, intelligent, and know how to make informed choices when given all the information needed to make those choices! Enjoy the journey!


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  • This is a restricted group.
  • Attachments are permitted.
  • Members cannot hide email address.
  • Listed in Yahoo Groups directory.
  • Membership requires approval.
  • Messages are not moderated.
  • All members can post messages.

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