Attitude · Blood Levels · Diet Compliance · Inspiration/motivation · Living with PKU · Moms · Promotion/Awareness

My PKU Story

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!

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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.

Well there you have it – a little bit about me and how PKU has and has not influenced my life.
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9 thoughts on “My PKU Story

  1. Thank you for sharing! I love reading your blog and I’m so glad I found it. My son has PKU, but he was also just recently diagnosed with autism. Our story is very different. A positive thing, I guess you could say, right now, is that because he is so picky and he doesn’t follow the social norms, we have no problem with his diet. He doesn’t care if everyone else is eating something different. I hope that doesn’t change, and I worry about how he will understand it as he gets older. I find blogs like yours so helpful to share with him when he is older so maybe he will understand the importance of his diet. And you just make me feel better too! 🙂 You are a beautiful and special young lady, and I wish you and your new family the best!

  2. Oh my goodness! Thank you so much! Well I am so glad you enjoy my blog. And bless your hearts. What an interesting situation! That’s awesome that he has no problem with the diet. I’ve known people with autism and worked with them as well (I did substitute teaching for special ed classes) and I know they are special people and it takes a very special family! So best of luck to you. Thanks for stopping in.

  3. I’m so glad I’ve found this blog. I’m 21 from Australia, and I have a 4 month old daughter who has PKU 🙂 I had the exact same reaction as your mother. It was so hard to hear at first, but the more information I get, and reading wonderful stories like yours, it makes me feel at ease. I hope my daughter grows up with the same uplifting attitude as you do, you are such a beautiful soul. We have the most wonderful doctors here, they are all so supportive, and so are my family! I just wanted to say thank you, and I hope you keep posting, I can’t wait to hear about the birth of your little one, I hope it all goes amazingly well. Thank you again 🙂

    1. Thanks for your comment! I am so happy you appreciate my blog, and I’m glad you like my mom’s story.

      I’m so glad to hear you have good doctors and family! Your daughter is very lucky. : )

      Keep in touch!

  4. I love reading your blog. You are beautiful young lady and mind. You have gave me faith and hope that my daughter will be just fine as you are. Your story make me think about PKU more in a positive way. I have a nine months old and she has a classic PKU. She is very smart and advance for her age. We take her to the Hospital every month and check her phe level every two weeks. It is not easy I would say but she is my world and I will do my very best for her. God blessed you and your family. Thanks again for sharing.

    1. Thank you so much! I’m happy for your baby that you are taking good care of her. My mom (or Dad) and I went to PKU clinic every month all growing up as well. God bless you for taking this challenging road. It will be worth it!

    1. Yes! Jackie, will you add me on facebook (Elisa B. Skidmore) so I can keep your face with your name in my mind? : )

      On Sat, May 17, 2014 at 2:44 PM, Me, You and PKU wrote:

      >

  5. It was really great reading your story! I am a 22yo male with PKU about to receive a B.S. in Marine Science. I really appreciate hearing your story. I have been finding lately it has been nice to hear other people’s positive PKU stories of people within my age range and older. Thanks again for posting it, I’m really glad I came across it! And congrats to you on your first born! 🙂

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