Patients and Providers for Medical Nutrition Equity Patients and Providers for Medical Nutrition Equity



My name is Renee. I am recently married in August 2017. I am currently on pre-con trying for our first child. My levels have been within range 2-4 so it is just a waiting game now. I have to struggle to keep them within range and closely monitor what I eat daily. My blood levels have to be drawn weekly. The cost of medical food has taken a large portion of our budget. I am lucky enough to get my formula covered through the State of Illinois and my Kuvan provided through NORD. I am not sure what I would do without Kuvan. I couldn’t even fathom the idea of getting pregnant without it because the cost of only eating medical food would break my wallet. I basically live on low-pro bread and low-pro noodles. It is a main staple in every meal and definitely will be when I get pregnant. I am lucky to have parents that supported me and did without so that my brother (also has PKU) and myself received the proper nutrition, but now on my own it is difficult as the cost of everything has gone up.

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