Emily, Age 18
My name is Emily and I am 18 years old with Phenylketonuria. I would have to admit that sticking to a strict diet of 256 Phe a day is not the easiest thing to do. There are so many foods to try and recipes to make. But not having the coverage, my medical food causes a lot of harm to me and my levels. I try to advocate for the support that us PKUERS get the foods we need in order to live happy and healthy, so I did. Another mother of a child with Pku and I went to Rob Portman’s office in Cleveland to speak to his representatives. I told them my stories of the struggle with paying a hundred plus dollars that my family can barely afford just so I don’t lose my memory or have mental damage. The woman could not wrap her head around it, it was a new, something to poke at and get into. She gave us limited options. We left empty handed. If the insurance companies will not allow medical foods to be covered, at least allow us to apply it to our health care spending account or deducted as a medical expense on our federal tax return. At a minimum.
My parents supply me with my medical formula every month after I get blood drawn because that’s the only way. I’ve spoken to mothers with newborns who fear for how their children will grow up and if they will get the right foods they need. I see so many PKU children that have parents change their eating habits to match their kids so they can support them. I struggled sticking to my diet because I was never given a large choice on what I could eat and was minimum to salads every day for four years in high school. My levels were so high when I was younger. It stayed around 18 to 20 and that’s when it causes damage. When it does, I gain headaches, my memory is cloudy and I can’t think straight. Children & Family services were called because of my levels and thought I wasn’t being taken care of but I was. As I’ve gotten older. I reached out to dietitians and cooked with them just so I can expand my foods. PKU is hard to accept being part of you, because of the different food choices from everyone else but that is what makes us unique. I reach out to here. That we can continue to fight for our rights for medical food coverage.