Everyone’s story is different. Here’s mine.
Written June 2013
I love how the internet and social media allows so many of us connect and share our stories and get to know each other. It has made me aware that everyone’s experience with PKU is so different. As someone who has been on diet my whole life, I realize my story may be different than many others, but it’s my story and it’s just as real. So here it is!
Well to start off I guess, I am 24 years old and from the Seattle, Washington area. I was diagnosed shortly after birth. You can read my mom’s story of finding out I had PKU here.
I feel that I was very blessed in many ways. One thing is certain and that is that I was born near an excellent PKU clinic. The University of Washington has an interdisciplinary staff that work together to meet the needs of the PKUcommunity. They held clinics every month where blood draws were done and food records checked. Parents met together in a support group fashion with a social worker and children met together with a nutritionist and learned about living with PKU and cooking low-protein recipes. Needless to say this support for my parents and me was very helpful.
I also have a very supportive family. I am the oldest of three girls and the only one with PKU. My mom took every effort to make sure I was following my diet. Throughout the years we ate dinner together every night and my mom always made both a normal meal and a low-protein meal for me. Looking back I realize how much work that must have been, but it truly blessed my life! Also, PKU was just a way of life for us. I feel that my parents struck the perfect balance between caring enough to commit to following the diet completely, but not being so worried about it that it weighed us down. They didn’t feel sorry for me– I had my special food and that is just the way it was. Growing up I gradually took more and more ownership with making my formula every morning on my own and explaining my diet to people who had questions.
My mom and I were interviewed for this article: PKU Hasn’t Stopped Elisa From Living Her Dreams by APHL
I know PKU can be very difficult for many people to deal with. Maybe it’s just my personality, but I have a very accepting attitude toward it. There is nothing I can do to change that I have PKU, the only thing I can control is how I respond. So I stick to the diet, no matter what. That way I don’t have to worry about it. It’s just the way it is. Honestly, I never wake up thinking, “man I wish I didn’t have PKU.” I have SO many other things in my life to be grateful for. To see how my faith has impacted my attitude toward PKU, read my I’m a Mormon profile here.
PKU hasn’t stopped me from doing anything I have wanted to in life. I feel that I had a pretty normal childhood and youth. PKU always requires extra effort and planning – but I had friends, I was active in my church, did well in school and pursued my hobbies of singing and playing the piano. I went to college and got a bachelor’s degree in Public Health with a music minor. I sang in an elite choir that toured the UK. I have travelled many places and countries with my family. I just mention these things to illustrate that if you follow the diet you can have not only a normal but a very fulfilling life.
Now I am married and soon expecting the birth of my first child. I am so grateful for the modern knowledge of PKU. Because of it, I can have a normal healthy pregnancy. My levels have always been in the safe range so I didn’t have to change anything in order to become pregnant. I am monitored by a PKU doctor and dietitian. I check my blood levels every week and adjust my diet and formula according to the feedback the dietitian’s give me. It has been pretty smooth sailing and I am excited to meet my little girl!
In my life, God and family are my first priority. But I am also very passionate about helping the PKU community. Everyone kind of has a different area of interest. I am most interested in diet compliance. Following the diet has meant everything for me in my life, and so I want to help other people be able to do that. I love talking to brand new moms of PKU babies to assure them that their child can have a normal life if they stick to the diet. As a public health major, I am very interested in the factors that contribute to our behaviors relative to the PKU diet. Is it financial? Family? Health professionals? Education? Attitude? I would like to see more studies on the emotional and psychological factors of having PKUand how health professionals can help in this area.