Random Post 1
Yes, I Have “Allergies”
You probably don’t know, but you’re tested for it as a baby. You have a 1 in 15,000 chance of having it. That translates to .006% of the population that lives with PKU. I am part of that .006%. PKU is the inability of the body to produce an enzyme that is used to break down phenylalanine. This buildup of phenylalanine in the body can lead to multiple side effects/symptoms including:
Eczema…had it! (probably coincidental)
Fair skin and blue eyes…got ‘em! (this is DEFINITELY coincidental)
Hyperactivity
Delayed development
Intellectual disability
I have a mild form of PKU called Mild Hyperphe, which means I am at less risk of these symptoms and side effects because my enzymes are present, but just partially functioning. However, I still can’t have things that contain phenylalanine, which occurs in food way more often than you might think. Gum, almost anything diet or sugar-free, and most foods that contain natural proteins all have phenylalanine in them. But did you see how long my explanation of PKU is? Do you think I want to go through that entire explanation when I tell people why I can’t take the stick of gum they offered me? No. So I just tell them I’m allergic.
My “allergy” has led to quite a few interesting stories. As a child, when my mom was at work I would go to my grandmother’s house for the day. I was a kid, so she had to get me food, but she also didn’t pay attention to the labels of the stuff she bought for me to eat. Multiple times she tried to feed me sugar-free yogurt that I very much should not have been consuming. All the yogurt went to my cousin and I didn’t get any snacks that week. I got into the habit of checking the labels on almost everything new I pick up because of this. If you see me in Target aggressively reading out an ingredient list, walk past me and act like it isn’t weird--thanks.
I played softball as a kid, and in order to live up to my true athletic potential I needed to take part in the most important facet of the game: eating sunflower seeds and obnoxiously chomping on bubblegum. My favorite was Juicy Fruit. I chewed it for two years. Nowhere on the packaging does it say it’s sugar-free. But it is. And for two years I was loading my body with phenylalanine before I read that ingredient list on a whim. Oops. I had to go get my blood tested for my phenylalanine levels, immediately. That’s another thing. Getting your blood tested daily is a traumatizing experience as a kid, and I had a deathly fear of needles for the longest time. My mom had to bribe me with toys and snacks. My favorite was the Disney Princess Hopscotch set. Nothing could top that.
Life with PKU is interesting, because almost nobody knows what it is. It’s so uncommon that sometimes my friends or family will even forget that I can’t eat what they’re offering to me. While it doesn’t necessarily make my life any harder, I’ve really always wondered what Diet Coke and the Sour Patch Kids gum tastes like.
Hi Samantha,
ReplyDeleteThanks for sharing. I really didn't know what PKU was until this blog post. I guess it's not very publicized because so little people have it. So yeah, if I were you I would definitely not want to explain it over and over again and would probably refer to it as an "allergy" as well. Also, I can tell you from experience, you're not missing out on not being able to try Diet Coke or South Patch Kids gum--both are overrated.
Elan
Hi Samantha!
ReplyDeleteHaving PKU seems like a really big hassle, especially since many foods aren't explicitly labeled as having phenylalanine, unlike if they are nut free or gluten free. Reading your post, I got reminded of a time in elementary school were I had a really bad allergic reaction and my eye swelled up. My teacher thought that I had pink eye and sent me home to go to the doctor. But at the end it was just an allergy.
Bryan
Hey Samantha,
ReplyDeleteI've never met someone who told me they had PKU. I never even knew you could be allergic to gum! I've got no allergies, but my close friend growing up had a long, long list. Having to look through ingredients all the time is definitely a pain. At least it's not the opposite and you're allergic to sugar though!
Kevin
Hello Samantha,
ReplyDeleteThank you for sharing your story. I personally did not know about PKU before reading your post and so I found it to be an interesting read. I understand how it would be exhausting to explain in technical terms why you can't have certain foods to everyone and it makes sense why you summarize it to them as "allergies". Still that's not the hardest part; I know it must be really difficult to make sure that you consume the correct things. Also, I share your sentiment about needles.
Ethan
Hi Sam,
ReplyDeleteI VERY MUCH so enjoyed your post because I actually just learned about PKU in my genetics class. I found it interesting that you said a lot of people do not know what this disease is because I could tell you every biologic component about it, but would not know what it is like for someone to actually live with it. I love love loved your post! I would love to talk to you about the blood disease that I have and some of the crazy things I have to say...I get nose bleeds constantly and have been asked many of times if I'm addicted to drugs, which to me is no funny joke.