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  • Writer's pictureSam Balenzano

PKU Spotlight: Jen

Hi Everyone!

I'm so excited to share another PKU Spotlight segment interviewing my friend Jen! We met at PKU Day in Vancouver. We live in the same area, have the same tolerance (except I need Kuvan to be on her level), and we drink the same formula (different flavours)!. Knowing someone with the same rare disease is a real game changer, although we didn't get to meet until we were in our mid-twenties! If your child has PKU, I would highly encourage you to meet up with other PKU kids whenever you can!

Jen talks about her experiences growing up with PKU and outlines how she was able to go on a pilgrimage in Spain despite having PKU! Check it out:

Name : Jen Age : 34

Location : Coquitlam, BC

Tolerance : I aim for 10 grams of protein (500 mg of phe)

Formula : Mainly PKU Sphere Vanilla but if I am away from home most of the day, at the office or out on a hike, I will bring along a Glytactin RTD Chocolate so I don't have to shake up the powder.

Extra treatment : No

Occupation : Library technician in a legal research library

Hobbies : Traveling (not sure when I'll be able to really do that again!), reading, listening to podcasts, trying new vegetarian recipes, going for walks and hikes with my dog, camping.

Favorite food : Regular -- I love really good bread, like a freshly baked sourdough, rosemary focaccia, or garlic toast. Low protein -- I am kind of picky when it comes to commercially prepared low protein products, so I would probably say fruit, especially cherries, nectarines, mangoes, and pineapple. I went to Maui one time and it was the best — I could seriously live on guava and passion fruit.

Most challenging part of having PKU: One of the most challenging parts of growing up with PKU was actually the monthly blood tests at the lab. I do not have veins that are easy to locate, and each time I went to have blood drawn there would invariably be a huge problem with the lab technicians being able to take my blood. I have vivid memories of people sticking the needle in my arm and then "going fishing" for the vein. Several times I was told to go home, drink a lot of water and take a hot shower and come back so they could try again. However, if you ask my mom, the most challenging part of having PKU was getting me to drink the formula when I was very young. She would read me a book and only agree to turn the page if I took a sip. Apparently it would sometimes take hours to drink one serving. I don't remember that but it sounds like I was quite frustrating to negotiate with! I think the flavour of the formula has vastly improved over the years, because now I chug it down with no problem, and I actually enjoy it!

Tell us about the pilgrimage! : A couple of years ago I had the idea to walk the Camino de Santiago pilgrimage route in Spain, to raise money for a charity called International Justice Mission Canada. The route I wanted to walk is approximately 700 kilometres, and I planned to cover the distance in 30 days. Because it’s a backpacking trip, that presented a extra challenge for me because of my formula. The amount of PKU Sphere packages I would need for 30 days would be way too much volume and too heavy to fit into my backpack. I came up with a plan to go to the post office in the city where I started (Pamplona), and mail my formula ahead of myself. I kept about a week's supply in my backpack and sent the rest to a city that was located seven day's walk ahead. I repeated that strategy four times. It was a bit nerve-wracking because if my package went missing at any point, I would need to return back to Canada right away -- there was no back-up plan! But it all worked out well and I had an amazing adventure!! I’m so glad that I figured out a solution and didn’t let it hold me back.

Words of encouragement : I would say that we Canadian PKU patients are extremely fortunate to live in a country that takes care of us so well with providing the formula, and in the past few years, the low protein food subsidy. Besides that, I find that following the low protein diet is easier than it used to be because restaurants and grocery stores have more options for people with special requirements like gluten-free, vegetarian, vegan, etc. Although living with PKU definitely has challenges, it’s just a small part of my life. I’m grateful because I know that it’s possible for each and every person who has PKU to live a full and healthy life!

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