Hello, I am a 50 year old Phenylketonuria patient at the UW Medical Center. I am one of the oldest patients in the PNW. My parents were told to put me in an institution but they said no and found a pediatrician that put me in the first clinical trial for treatment of PKU. PKU patients in this day and age are very lucky to have many dietary resources offered to them for the treatment of PKU. When I was younger there were no specially made foods for me to eat to keep my Phenylalanine levels in my blood so low that it would decrease my chance for retardation. There was only a phenylalanine free formula. These formulas are very important as well as because they fill me up. They are about $1240 without insurance and with insurance I pay $310 per month. I am currently now using these wonderful new foods. However, they are very costly it costs about $500 dollars for food not including shipping and tax. Bread is about $10.00 per loaf. I could make it however, but the flour is special as well and so it costs about $16.00 per pound. This is on top of having to buy vegetables, special non-dairy creamer, and other specialty items per month. All costing about $10-15.00 per item. I am okay, I have a Masters in Teaching and am currently teaching Kindergarten in Washington. So everything turned out okay. I am one of the lucky ones. I think all the time of patients that went through the study that weren’t so lucky! I adopted my kids because as a PKU woman I need to be careful about having my own baby. My baby could be retarded. Lots of challenges still so please help us live a less challenging life! It would help me use some of my personal funds to make a better life for my 3 kids and my husband!
Patients & Providers for Medical Nutrition Equity
Working to secure access to medically-necessary nutrition for all.