Overcoming the Unusual

Sophomore hopes to spread more information regarding rare genetic disorder


Ayesha Khan and Liya Patel

When you think about some of your favorites foods, there’s a good chance they contain protein. Now, imagine not being able to eat any of them. 

For sophomore Maci Hazel, that is her reality while living with phenylketonuria, more commonly known as PKU. 

“It’s a rare genetic disorder that causes an amino acid called phenylalanine to not be broken down in my body,” Hazel said. “To put that into simpler words, my body doesn’t have what it needs to break down that certain type of protein, which causes me to only be able to have a limited amount of protein every day.”

Hazel found growing up with this uncommon condition to be difficult.

“When I was younger, it affected me a lot more,” Hazel said. “Whenever I went to birthday parties or to school, I would always have to bring my own food. That obviously made me feel really out of place.”

Despite the lack of short-term effects, it can be detrimental to her well-being in the long run. 

“If I ate a bite of steak or a piece of pizza, nothing would happen; but if every single day I ate a lot of protein, since my body can’t break it down, it’ll build up and start to block parts of my brain,” Hazel said. “Over time if I were to eat protein every day, it would cause brain damage.” 

Pullquote Photo

“It’s something I’ll have for the rest of my life unless they come out with new treatments“ ”

— Maci Hazel

With age, Hazel has discovered ways to manage and accept her disorder throughout her daily life.

“There’s a lot of gluten-free foods that are lower in protein, so I’ve just found stuff that I like and that I can eat,” Hazel said.

Hazel fills her diet with lots of fruits and vegetables due to their low protein concentration and enjoys going to certain restaurants that offer gluten-free and dairy-free options.

“All my friends are so used to it now because I’ve had it for the entire time they’ve known me,” she said. “It just doesn’t bother me as much anymore.”

Even with these alternatives and adjustments, PKU, nonetheless, takes a toll and provides its adversities. Hazel finds comfort in knowing everyone has their own individual struggles. 

“Eating is a part of everyday life, and always having something different when it came to that was really difficult for me, especially when I was younger,” Hazel said. “I’ve realized as I’ve gotten older that everyone has things that make them different, which is why it bugs me less now.”

Another source of strength for Hazel is her sister who also inherited the disorder. 

“She’s younger than me, so I had to set a positive message for her and show her that I can live a normal life with it so she can, too,” Hazel said. “I basically had to be a role model for her, knowing that it’s something we both have to deal with. I wanted to keep a positive attitude so she would know it’s something manageable.”

Hazel chooses to focus on how her PKU condition is something that has made her stronger and more resilient. 

“It’s OK to have things that make you different,” Hazel said. “Hopefully with sharing this, it’ll help people and educate others because not many know what it is — that’s the most important thing.