My Story

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!

 
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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.

11 thoughts on “My Story

  1. I was diagnosed with PKU when I was a newborn, I am now 15 years old, healthy as far as I am concerned, it is very difficult going to school being different having to eat different than everyone else.. Nobody has ever really bullied me about it because I don’t tell everyone, I really just try to avoid talking about it.. Every trip I take to the doctor I feel like they are totally crushing my future about having a family about getting married, its just crazy.. It has been a constant battle with me mentally, emotionally, and physically, and hardest of all my mom.. I think it has made me and my mom distant ourselves from each other.. I think she shouldn’t have to put up with me having to make me different things for supper than for my brother and her.. I’ve been through a lot, like my dad passed away when I was 7 years old I was always a daddys girl, so I have dealt with new guys coming in and out of my moms life, now I have pretty much lost everyone on my dads side that I was close to, except my mamaw papaw and aunt! I get down about this sometimes, but its hard for me to distinguish between that depression and my high blood level depression and anxiety… Im fine so far, its a long battle and a constant battle, but I will be okay, Don’t be ashamed of who you are and let your light shine as bright as you possibly can because you are you and the right person will come along and love you for who you truly are!

    1. Hi Daneika,

      Nice to meet you! Thanks for introducing yourself to me. I’m sorry it’s been so hard for you having PKU. I know it’s hard to be different, especially at 15! I remember in junior high drinking my formula at my locker and feeling a little self-conscious. But my mom always told me (and now I see she was right) “If you don’t care, they won’t care!” And it’s true. There is nothing to be ashamed about! You are unique. And that’s cool!

      You can do this Daneika! Just know that you are not alone! Your health is really important so do you best to stick to the diet. And don’t let the doctors worry you about your future. Your future is bright! Especially if you drink your formula and stick to your diet.

      Did you know I am actually married and have been blessed with a beautiful baby girl! She is turning 1 on Sunday. I am so happy with my life. Following the diet has meant everything. PKU hasn’t stopped me from doing anything I have wanted to do. I have traveled around the world and I graduated from Brigham Young University with a bachelor’s degree.

      Hold on to your dreams!

      Keep in touch,

      Elisa

      On Fri, Jun 20, 2014 at 7:02 PM, Me, You and PKU wrote:

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  2. Elisa,

    My name is Erin, I am 24 years old and have classic PKU. I came across your blog trying to find recipe ideas. I read this article and saw that you’ve had a baby. I am actually trying to bring my levels down to have a baby and thought maybe we could chat? Would be nice to talk to someone who has gone through it. Oh I live in Kirkland, Wa. 🙂

  3. Hi, my name is Vid. I come from Slovenia and I am 21yo living with PKU. I came across this site while searching for some exchange programs for people with phenylketonuria. I’d love to travel around the world more but there is always the obvious problem of what and where would I eat.
    Me and my family are opened to accept anyone for a week or two here in Slovenia (its a beautifull country;). So if anyone here has similar interests please write me to my mail: Vidprg@gmail.com

  4. I am a 24 year old living with PKU and PKU has made me string and healthy and aware of how important it is to take care of your body. It hasn’t stopped me form traveling, studying, and loving life. I am happy ti have found your blog it is so informative and makes me happy to see others who are thriving and succeeding and embracing life with PKU!

  5. Hi there.We have a 22 months old son who was diagnosed with PKU in 2014. We live in UK. I remember reading your blog when we first found out that he had PKU. Your blog was so helpful to us, we could see into your world, your diet and positive attitude. You inspired me to share our own journey and start a blog to share information and recipes. Here’s a link to our blog: https://pkuandmyfamily.wordpress.com/

  6. Hi Elisa,

    My name is Denise. I’m a Dutch PKU patient and I’m currently doing a PhD on PKU in Leeds, UK. In my hunt for other PKU patients to help me with my research by completing an online survey I stumbled upon your blog! I’ve only read parts of it but it’s good to see you have not let PKU stop you from living your dreams!

    The aim of my research is to get more insight into dietary adherence (especially adherence to dietary supplements), factors influencing adherence, and outcomes of adherence on quality of life and executive functioning in daily life settings (e.g. planning abilities, memory etc.).

    If you wish to participate or would like more information about the survey, contact me via psc-pku@leeds.ac.uk

    The survey takes about 25 minutes to complete. I would be very grateful if you could help me out!

    Best,
    Denise

    ps. This survey has been granted ethical approval by the School of Psychology Ethical Review Committee, University of Leeds, United Kingdom, reference number 15-15-0398 (07/01/2016).

  7. Hi there 🙂

    Feeling a little late to this party but when I found this I became very excited! I too am LDS, with PKU and expecting my first child. I actually went my whole like knowing I had PKU, but never was monitored or treated. I ate what everyone else ate, and somehow I was blessed and protected. When I turned 18 I then realized what I really had and the risks so I decided to get treated and monitored. I am now 21 and pregnant but feeling guilty and struggling with my formula. Whenever I take my formula, my body rejects it and it does the same with pills. I am by no means letting PKU run my life I have always felt in control but in the last couple weeks I have really felt as if I am failing as a mom by not getting the medicine in.

    1. Wow that is quite a story Madison! Well congrats in being pregnant! I have some questions for you – have you joined the maternal Pku group on Facebook? Also have you heard of the PKU mentor program? You can get a personal mentor (for free) to have contact and support from someone who has been through this! Here is the website. If you have more questions email me by using the Contact Me page here on my blog! I would love to chat more about the formula. Thanks for commenting!

      http://adultswithpku.org/Mentor-Programs/Maternal-PKU-Mentor-Program

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