Alissa is a special education teacher, a 5k runner, and a world traveler. She also has classic PKU. Here is her story.
What was it like growing up with Classic PKU?
Growing up with Classic PKU was just like anyone else growing up, I just ate differently. Classic PKU, my special diet, my formula, and all that came with having PKU was all I knew, so I just accepted it. From a young age, I knew and felt that I was different and needed different things than most. I was always on diet, but drinking formula was not my favorite thing to do as it wasn’t as tasty when I was very young. I knew it was what I needed to grow and to feel good so I stayed on diet and drank my formula every day. I stayed healthy and still am. PKU was and still is just a part of me.
What was your Phe tolerance as a child? What is it now that you are on kuvan?
My phe tolerance as a child was pretty low. I ate low protein food products and was limited in my daily protein intake. My formula was always my priority to get enough protein and vitamins. After finding out I was a responder to Kuvan, my phe tolerance has gone up. It is so nice to be able to have a little more freedom with my diet. There are some days when I’m hungrier and it’s nice to know that I’m able to eat some more. Whether it be having more potatoes, a piece of chocolate, or more dark green veggies, it’s been great to have more flexibility. My levels have been primarily in the 2-4 range since taking Kuvan.
What were/are some of your favorite foods to eat?
Artichokes, shitake mushrooms, and Brussel sprouts are my favorite vegetables. I could eat avocado, veggie sushi, veggie Pad Thai, low protein gnocchi, French fries or potatoes (regular and sweet) any day. I love just about any fruit especially strawberries, watermelon, pineapple, and papaya. I love low protein crepes, bread, cookies, pasta, bagels, and pretzels. There are so many more products for us nowadays, so I’ve definitely been taking advantage of that trying new things and ordering them and cooking and baking with them regularly.
Did you ever struggle to follow your diet?
When I was younger I went through phases where it was harder to accept and sometimes discouraged by the many things I couldn’t eat. It was hard to fully comprehend the effects of my diet when I was really young. I had times where I would eat half a bagel or a slice of cake, but found out that higher protein things weren’t really worth the phe when there were alternatives. My parents were always the best chefs and my heroes.
What was hard about dealing with PKU?
Going out to eat and going to parties growing up was sometimes difficult. My parents always made sure there were options for me or I would bring something I can eat. I didn’t want the attention when I was younger though. I would always bring my own lunch to school. I always drank my formula at home or at school. I wish I had brought it to lunch. I drink my formula every day at work now and love it. Back when I was younger, I thought it smelt funny and did not want to be seen with it.
What helped you stick to your diet?
My family was always there to support me and always made sure there were food options for me at home and when going out to eat. They like to eat a lot of vegetables so at dinner there were always low protein things we all ate and then something that was special for me. Growing up, I liked having my special food that was just for me. I knew that it was good for me and I like to feel good and be healthy and that was usually enough to make me try my hardest every day. Knowing the alternative of not treating PKU and how much harder things could have been if I were born before treatment options always inspired me to try my best. I’ve been given the best treatment and the opportunity and power to do my best and I never want to take that for granted. I am very thankful and feel blessed for all the things that I have and the things I can do.
What role did your family play in your PKU?
My family played the most important role in the outcome of PKU on my life. Their hard work and effort from the day I was diagnoses with PKU paid off as I turned out to be just fine. I don’t know what I would have done without them. I’m very thankful to have parents that care so much and did everything they could to provide me with the best. My family always was there for me in every way growing up with PKU. They are still always there for me. While growing up they cooked, ordered my formula and low protein food, dealt with insurance issues, took me to every clinic appointment, helped me with blood tests, and advocated for me and my diet in every way that they could as parents. They’re the best low protein chefs I know. I never felt left out at any meal at home. They constantly looked for creative and new recipes and things for me to try. They are my number one supporters and fans of me and my successes.
What did you like to do growing up? How did that work with your PKU?
I tried a lot of sports and activities during my school years, PKU never stopped me from trying things. I played soccer, did swim team, gymnastics, rowed crew, did dance, girl scouts, and took art classes. Art has always been my favorite outlet especially painting and taking pictures. With playing sports, I always made sure to drink my formula and get good sleep on my more active days. I’ve always been active at school and outside of school. Now I like to do workout classes and do 5k races once in a while. My next 5k is the MAPKUF Inc. 5k for PKU in Maryland in May. I am very excited to run with my family and friends and to meet other PKUers and their families.
What do you do when you go out to restaurants or eat with friends or in groups?
I always try to plan ahead. Looking at menus ahead of time to see the options helps. Many restaurants are great at accommodating, but you have to speak up. Leaving nuts and cheese off, replacing meat with veggie options, putting salad dressing on the side, there are many ways to cut the phe when eating out. Ordering sides of veggies, a side salad, or a side of fries has always been my fallback and I usually prefer them.
Sometimes before going out, if I know there might not be as many options, I will eat a little something before. I carry my formula everywhere I go and even keep some in my car just in case.
You are currently on Kuvan, how did you come to the decision to try it?
After going to the NPKUA 2014 conference in Salt Lake City, Utah last summer I had the opportunity to network with other PKUers that had tried Kuvan. I heard many positive experiences and more of the research of it while at the conference. I felt that it was a good point in my life to give it a try so I began my trial. What an exciting, life changing experience it was to find out that I was a responder.
Has Kuvan changed your diet? If so, how?
It has changed my life in allowing me to become more flexible with my protein intake. I’m still in the process of finding out its effects and more of what my phe and protein tolerance actually is. It’s been an adjustment, sometimes it even feels odd knowing I can eat some more, but overall it’s been a great one.
What doing in your life currently?
I’m an elementary special education teacher. I’m finishing my second year of teaching soon. I really enjoy teaching my students and helping others. I find my work always interesting, challenging, and rewarding. I’m very happy with my school and career paths.
What are some of your greatest accomplishments?
Graduating with my Bachelor’s degree in Psychology, Cum Laude and my Master’s degree in Special Education, Summa Cum Laude and becoming a special education teacher have been my greatest accomplishments so far.
You just returned from a trip to England. How was it? How do you navigate your diet while traveling?
It was an amazing trip! There’s so much history, neat culture, museums, good shopping and good food in London. I went to Stonehenge and Bath as well, beautiful places. I definitely recommend seeing those sights if you get the chance. While traveling, I always make sure to have a few BetterMilk formula packets in my purse and carry my Kuvan and doctor notes. I also make sure I have a low protein snack or two, just in case I get hungry and am worried about food options. What’s great about formula is that it is very filling and gives you energy. I recommend having it with breakfast at hotels so you can get ice. It’s a great feeling to start the day with cold BetterMilk, but having it on the go works well too. I like to mix it in plastic water bottles to drink on the go and then I don’t have to carry bottle mixers. I was able to find a low protein option in every restaurant I went to. English chips and salads were my favorites.
What would you say to other children, teens or adults living with PKU?
Remember you have formula and food options! Stay on diet and never stop trying. Don’t be afraid to try another low protein food, recipe, or formula. Keep asking questions. PKU is just a part of who you are. It’s up to you how you choose to see it. There are many more options for us nowadays. Reach out to others with PKU, stay in contact with your dietician and doctor. There may be some harder days, but you’ll learn, give it your best shot, and become stronger and smarter. Be proud of your efforts and what you’ve accomplished. Be your own PKU rock star.
What would you say to new parents of a baby diagnosed with PKU?
You will be great parents and your baby will be just fine with your love and support. Formula, diet, and support will be what your baby needs. Reach out to other PKUers, PKU parents, dieticians, and doctors for ideas and support. Whether it be through your clinic, Facebook, email, etc., reaching out to others can give a great sense of connection. You are not alone. There are so many options with low protein food, formula, and treatments like Kuvan nowadays and there will only be more and better quality ones over time.
Anything else you would like to add?
Be an advocate for yourself and PKU. Never stop learning and trying new things (in life and PKU related). Diet for life is key! Make choices that make you happy and healthy.