Molly Dressen

Phenylketonuria (PKU)

I remember my younger years when my parents told me that I would probably only have to deal with the diet until I was in school. Little did they know sixteen years down the road that is not reality. Now we know how important "diet for life" is. the good things that came with those sixteen years were experience, new foods, and new methods of drawing blood. I remember the days when my mom would slave away baking me perfect chocolate cookies, only to find one crumbling before I could get it to my mouth for a taste. I can't even begin to express enough gratitude to the people who have spent their time helping to make my life with this disease so much more "tasteful".

Since I am reminiscing, I might as well discuss the progression of blood draws. I remember the knotted-stomach feeling when I went for visits to the U of M. I loved seeing the people there, but the blood draw before the visit always had me nervous. Luckily, my mom is a Nurse Practitioner so she started doing the blood draws at home at an early age. Now, with the invention of the filter paper and some more great ideas from the lab tech at my mom's work, I am able to draw my own blood without the throbbing prick in the finger. I draw blood from a vein in my arm using a syringe and a special needle called a butterfly. I'm actually starting to enjoy blood draws.

The years before high school seemed like a never ending road. I thought I would never make it because they seemed so far away and I thought my PKU diet would affect my learning before I made it there. It was hard to be precise about my diet when I was often worried about what others thought.

Before I knew it, I was in high school and what others thought of me didn't matter any more. Even with the trials and tribulations I went through, I was able to fully participate in high school. I was a cheerleader for football, basketball, and wrestling. I also played varsity golf for four years and was captain as a Senior. Other activities included playing saxophone in band and singing in mixed choir. Outside of school I danced since age four, winning many awards with my group. I was always active in my church youth group. For my summer job I taught swimming lessons and lifeguarded at our local pool for five years. I'm also a certified scuba diver. All of my involvement in high school gave me some of the best memories of my life and I'll cherish them forever.

My high school years were a good prerequisite for college life. I knew who I was and why my diet was so important to me. Planning my diet for college wasn't that hard. I knew what special recipes were staples in my diet and which ones I liked best. We spent time before I moved in to bake foods and get things prepared. Instead of getting a little refrigerator, we got a little freezer to keep all of my special foods. My roommate Kristan and some of my friends like that I have a freezer too because then their ice cream won't get stolen from the community freezer.

The University of Wisconsin-river Falls requires all "on campus" students to have a meal plan. We wrote them a letter explaining the diet I'm on because of PKU and I was exempted from the meal plan. I do go to "Freddie's" with my friends sometimes. It's a restaurant in the student center and I can pick up a fresh salad, grab some onion rings, fries, or a baked potato. I don't have a lot of time to cook for myself, so this is a good way to get food all ready to eat and socialize with my friends. Another thing that works will with my busy college schedule is TV dinners that my mom prepares from left overs. All I have to do is pop them in the microwave. 

River Falls is about one hour away from my home in Prior Lake. Being close to home for my diet was one of my reasons for choosing the college that I did. My Mom comes to visit me about every other weekend. That's when she restocks me with my special food. If I ever go home for the weekend, she fills me up then too.

I love my college life and have been involved in many campus activities. I have continued to dance and I'm very involved in Dance Theatre, including being an officer. I also played intramural football (my team took 1st this year!) and broom ball. And most important, I'm doing well academically, including making the Dean's List this past semester.

As hard as the diet may be at times, you can learn to work around it. Working with my diet has allowed me to go on many family vacations in the Caribbean. It just takes a little planning. We have a cooler on wheels we travel with. My newest challenge with my diet will be my trip to Guadalajara, Mexico. I am spending a month there this summer to practice my Spanish, which is my minor. 

Think of your life with PKU as a journey. There may be obstacles along the way, but you'll learn to deal with them in a special way.  There may be sparks for a cure, but don't let those hopes be dampened by time or keep you from making the most of the present. Your life can be as happy as you make it!

Peter Singer-Towns

Phenylketonuria (PKU)

I won't lie; being on this diet is difficult and and very tempting and easy to struggle against. If you are used to eating pizza and burgers (cheeseburgers are nearly one thousand phe!) you better stop. Besides, there are replacements for virtually every normal food you eat, and although some of them don't taste exactly the same (and some a little nasty,) you get used to it. It's fun to brag to others about it too.

When I first visited the PKU Clinic, all the doctors thought it was amazing what I had done. At one time in 1998, I had a level of somewhere in the low twenties, now I have a record close to two. They often asked me what inspiration caused me to try it. It was my mom. Without her I would still be struggling in many things. It takes a while to learn to cook these things and get the ingredients, I'm sure, but she promised to do it if I could keep the diet. So I did. But even now I want some cheez-its. Some people would go for it, but not me (especially when we are taking measurements on my intake this week.)

So I encourage you to try it out, if you can and look for results. I don't promise miracles, and some of the effects take a while to take place. Some haven't even appeared in me yet. Thank you for reading this.