Eating meat could give me seizures: The reality of living with an incurable disease called PKU

I’ll never be able to stray from a vegetarian diet

PKU, otherwise known as Phenylketonuria. You probably don’t know what that is, but you were tested for it the day you were born – it occurs in 1 in 10,000 to 15,000 newborns.

I’m one of the seemingly few people in the world living with PKU. Babies who are diagnosed with PKU are treated with a low-protein diet (no meat, chicken, dairy, fish, etc.) The body is unable to break down and process the important amino acid, Phenylalanine. When there is a build-up of this amino acid, the PHE (short for Phenylalanine) levels in the blood also rise. You can only inherit PKU if one or both your parents have it, or both your parents carry the genes for it. Both of mine happened to carry the genes for PKU, and here I am. Straying from a strict low-protein, vegan or vegetarian diet not only causes massive weight gain but also high blood pressure, high cholesterol, behavioral problems, and other major health issues (in more severe cases, mental and physical disability).

So, to answer everyone’s questions so far:

No, I have never eaten meat. No, I won’t ever be able to. No, there is no cure for PKU.

And I’m okay with it. Most people would assume that this lifestyle is one of the most challenging things ever, but I find myself often forgetting that I have it. It’s a blessing for me. It affects me in a variety of ways on a day to day basis, usually in a positive light. It’s a way to keep me in line with my health while also eating damn near the healthiest diet that exists today. Some people may find that to be burdensome, but it is something I’ve known all my life. And the greatest thing about PKU? When you do the diet the right way, it’s effects on your self-confidence are wild. 

Phenylketonuria sufferer, PKU sufferer, PKU girl

In layman’s terms, I’m not going to die.

A lot of people do assume that PKU is a life-threatening type of situation. While there is no cure, the treatment is simple – eat right. However, the biggest challenge I’ve ever faced that interfered with my PKU was definitely entering college. I’ve been maintaining a low-protein diet my entire life. I’ve always been fairly great with it, until college. Unfortunately, I was cursed with the Freshman 15, which is typically inevitable. I was eating a lot of crap.

I’ve always loved junk food from time to time when I was younger, but when I got to college and was able to make my own decisions, let’s just say fast food was a regular thing. I don’t think I put one vegetable in my mouth sophomore year either. I went overboard. I feel as though every college student can relate. You go into college saying you’re going to eat healthy and go to the gym everyday, but instead you go to the all-you-can-eat diner three times a week. You’ve all done it, don’t lie.

This, in turn, had a major effect on my PHE levels. My mother was the first one to notice. I had gained a visibly unhealthy amount of weight, I had high blood pressure and borderline high cholesterol, and my depression/anxiety was out of whack. High PHE levels are a huge contributing factor to the physical and mental attributes of an individual with PKU. The temptations of college were sneaking their way under my skin and into my bloodstream, literally. I had to make a change. 

Phenylketonuria sufferer, PKU

Me on the far right, Sophomore Year of College 2014 – weight gain, high blood pressure, and other health issues emerging

It’s also tough being the one odd-ball of the friend group in college who has to have vegetarian and vegan options when we go out to eat. My friends and I all love to go out, but it’s always upsetting knowing my friends may have to center the plans around me. Everyone may be feeling burgers or wings, but I can only get a salad at the restaurant. So typically plans are centered around what I want. It’s a plus, but also makes me stand out as the girl who can’t eat meat.

As a young adult, I’ve educated myself on different low-protein foods, veganism, and incorporate various methods of activity into my daily routine. The straying away from the low-protein PKU diet not only affects me physically, but mentally and emotionally as well. I now realize that my PKU is important. It makes me special and it requires attention at times.

While it may limit me, it does not restrict me. It provides me with everything that I need, not necessarily what I want. I couldn’t be more grateful to have this part of me that continues to educate and uplift me everyday.

Phenylketonuria sufferer, PKU

Circa 2017, Senior Year College, 100% Vegan, low-protein, and healthy

Coming soon