The Reality of PKU: Traveling With a Rare Medical Disorder

Well here’s something I’ve never discussed on Shut Up and Go. You might know me for my romantic Turkish love stories or maybe even for my detailed layover guide. However, did you know that I was born with a rare medical disorder? 

For the sake of intersectionality and the fact that PKU awareness day was on December 3rd, I figured I would shed some light on my story living and traveling with Phenylketonuria (PKU).

Guy in Lisbon
Don't ask me what pose I'm doing in this photo. Just wanted to break the serious tone of that introduction.

Phenylketo-what? For those of you who don’t study biology, you probably have no idea what I’m talking about. That’s ok – PKU generally affects 1 in 15,000 newborns so it’s a pretty rare condition. I was diagnosed shortly after birth through a newborn screening test, and immediately after, my parents realized that they needed to raise me a bit differently than other kids. 

Ok, so let’s break this down. Since I have PKU, I lack the enzyme which converts the amino acid phenylalanine into tyrosine. In basic terms, I can’t consume a lot of protein. Before you say that only meat contains protein – let me stop you. EVERYTHING contains protein. Except water really… and maybe some fruits.  By the way, I also can’t drink diet soda or chew most gum. They usually contain aspartame which is teeming with phenylalanine. 

So what has my life been like? When I was a baby, I used to receive blood tests every day, which gradually became every week, then every month.  Long story short: I had a lot of freakin’ needles being stuck in me all the time. Oh, and did I mention I could only eat 7 grams of protein per day? Like even a normal container of yogurt would put me over. Therefore, I needed to eat expensive low-protein food ordered off the internet all the time. Not to mention going to other kids’ birthday parties, the school cafeteria, and eating out with family all were a nightmare. If I were to have eaten “regular people food,” I would have basically been tackled with a whole slew of problems both mentally and physically. Just to give you an overview, children who have PKU but are not treated grow up to be severely disabled.  When I say severe, I mean I’ve read cases of kids who can’t even walk or talk. This is common in many places around Asia, the Middle East, and Africa which do not require newborn screening tests for PKU.

Luckily, when I was around 11, a medication named Kuvan was released to allow people with PKU to consume more protein. I jumped on the trial for this drug as soon as it came out, and low and behold, I reacted pretty dang well. I now take 14 pills daily, along with a few tyrosine supplements, and I can live like a normal vegetarian. However, if uninsured, these pills cost $100 each. That’s $1400 a day. Yikes.

I have to say, I now have it easier than most people with PKU. However, my travels have still been littered with interesting… misunderstandings. Up until I was 19, I drank a type of formula made from a can of white powder. Coupled with the fact I carry containers of pills everywhere I go, let’s just say I have been stopped at security quite a bit. No, I was not stopped because I was of a certain skin color nor because I dressed in a certain way.  To be frank, all of the TSA workers wanted to know why I was hauling around cans of a mysterious white powder and more pills than a CVS delivery truck.

I might have done a lot of random shiz to make moolah for travel, but trafficking drugs has not been one of them.  

Lastly, I guess the whole “restricted diet” thing has also been a bit difficult. However, now that everyone seems to be gluten-free, vegan, photosynthetic, etc. I don’t feel as alone as I did when I was a child. At the same time, it can be a pain explaining to people who think my diet is a choice that I actually need to be a vegetarian. I’ve had “friends” jokingly trying to trick me into eating meat, not realizing how dangerous that would be for me. I have also had so many awkward encounters in meat-based cultures when I try to explain to people that it’s not a preference but I literally cannot consume meat or seafood. Some people get offended, but most eventually understand.  Throw in a language barrier; however, and things get a bit more complicated.

The most important weight hanging over my head; however, is that whatever I do in the future – I need to make sure I can receive my medication. I can never live in a country where they do not provide it nor where I am not insured. That basically eliminates half of the world *insert sad emoji.*

Suitcase of pills
Here's just a preview of all of the pills I take with me on long trips.

However, I gotta say – I’m pretty proud of myself right now. Despite being born with this rare disorder, I’ve been able to see so much of the world, learn a ton of freakin’ languages, and now I’m about to shut up and obtain my masters degree. Like what? My parents were terrified that I wouldn’t live a normal life when I was born, but I showed them that no disorder was gonna keep me down.

Anyways, if you feel inspired by my story and want to donate to a PKU organization, here’s the National PKU Alliance. It’s an organization dedicated to improving the lives of those who were born with PKU while working towards a cure. Many of the struggles within my community involve having more affordable and accessible low-protein food options, receiving insurance coverage for medical formula, and fighting for the inclusion of PKU on newborn screening tests all over the world!  

Do any of you have a medical disorder?  If so, how has it affected your travels? Let us know in the comments below!

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