adultswithpku.org

meupku.wordpress.com

PKU – Me, You and PKU

https://meupku.wordpress.com/pku

Me, You and PKU. A rare disease, a wonderful life. Or PKU is an inborn error in metabolism. It is a defect in the enzyme. Phenylalnine hydroxylase, which normally processes the amino acid phenylalanine. For use in the body. This defect leads to a build up of phenylalanine in the blood which causes neurological damage. Phenylalanine is found in most dietary protein. For this reason phenylketonurics have to maintain a low protein diet. 2 thoughts on “ PKU. January 28, 2016 at 5:56 pm. Address never made pu...

meupku.wordpress.com

New Moms – Me, You and PKU

https://meupku.wordpress.com/new-moms

Me, You and PKU. A rare disease, a wonderful life. A page for parents with a recent diagnosis, or anyone who has someone with PKU in their life. Welcome to my blog! I am so happy you are here. As someone who has lived with PKU my whole life, I really want you to know that even though this can be a scary diagnosis, it will be ok! PKU is a very serious disease, but it is completely treatable! Count that as a great blessing. The biggest things I would remember are:. Felt like when she found out I had PKU:.

npkua.org

Insurance Coverage

http://www.npkua.org/Resources/InsuranceCoverage.aspx

It can be frustrating getting covered for your PKU treatment. Many families and adults have challenges getting the PKU formula and low protein foods by your health insurance. “Medical foods” is the primary language to use when dealing with your health insurance on these issues. All you need to do is follow a few simple steps: insurance language, understanding insurance coverage and stay positive! Durable Medical Equipment (DME)/Medical Supplies. Fully Insured or Self-Funded. From My PKU Binder. Insurance...

npkua.org

NPKUA > Resources > Recent Diagnosis

http://www.npkua.org/Resources/RecentDiagnosis.aspx

To visit us often. We hope the following tips help you as you begin to make sense of a PKU diagnosis and what it means to your family. First, congratulations on the birth of your new baby! We know that a new diagnosis for PKU can be a time of uncertainly and even sadness. Please remember to celebrate the new life of your baby. PKU is manageable, and you have a whole community here at the NPKUA to give you resources and support. Your baby will still be able to do all of the things you have imagined or dre...

npkua.org

NPKUA > Resources > Return to Treatment

http://www.npkua.org/Resources/ReturntoTreatment.aspx

A short booklet has been developed to help. Adults with PKU return to diet. This booklet,. Created by adults with PKU, will offer information and short simple notes to help adults on their journey. Click here. To view a PDF of the. To learn more, download our PDF of. This document requires Adobe PDF Reader. To download it if it is not installed. Teen and Adult Website. 2014 The National PKU Alliance. Site Map Privacy Policy Contact Us.

npkua.org

NPKUA > Resources > PKU Camps

http://www.npkua.org/Resources/PKUCamps.aspx

Each year a number of state organizations and clinics host camps for children and families with PKU. Camps are a wonderful way to connect with others in the community and forge new friendships. April 30 - May 1, 2016; Meridian, TX. NORD Summer Family Camp. June 2 - 5, 2016; Ashford, CT. IPAD's PKU Mini Camp for Kids. June 17 - 18, 2016; Salt Lake City, UT. Metabolic Camp Emory University. June 20 - 25, 2016; Atlanta, GA. July 10 - 15, 2016; Burton, TX. Camp Knot a Phe. July 28 - 31, 2016; Prescott, AZ.

npkua.org

NPKUA > Resources > Cooking & Food

http://www.npkua.org/Resources/CookingFood.aspx

Food is central to our life – not only for essential nourishment, but also an important part of how we celebrate holidays, honor family traditions and experience new regions and cultures. This doesn’t change when you or a loved one has PKU. Whether you’re an experienced cook or have rarely stepped inside your kitchen, the following resources can help you integrate low protein food into your life and your celebrations. RECIPES FROM THE 2014 NPKUA CONFERENCE. Enjoy Sweets and Treats the Low-Protein Way.