PKU Spotlight: Meet Lib

We are BACK with our PKU spotlight series, where I interview someone from the PKU community! Today we will be chatting with Lib!

Lib is such an encourager, every time I post something on my PKU instagram she cheers me on! We also live in the same state so it has been super fun getting to know her. She's also a new mom and a boss babe dancer!

Hey Lib! Let’s start off with a little intro. Can you tell us about yourself?

Hi I’m Lib! I’m 26, I have classic PKU, I’m a dance teacher, and a proud mommy to my baby girl!

Tell us about your current treatment plan. Is it working for you? Anything you’d change?

I’m currently taking Kuvan and I am a “super responder” to it. Something I would change is maybe the flavor 😂 and I wish it was accessible to more people!

How has PKU affected your day-to-day life, especially growing up and now as an adult?

Growing up with PKU was my normal but I still felt a little different from everyone else. It affected my performance in school because I struggled and didn’t have the motivation to do better because I was worried of what other kids would think. Now as an adult who responds to Kuvan, and currently has no restrictions… I feel lucky enough to say that I sometimes forget about it! I never would have thought that I would say that. I feel very hopeful for the future generations of PKU patients.

What’s something you wish more people understood about PKU?

I wish more people were just more educated about it. I think that would help with a lot. I wish people knew the “proper” way to respond when people say they have PKU. Sometimes, some comments can be harsh without even realizing!! & it is NOT contagious!

Have you faced challenges managing your PKU?

I’ve definitely had challenges. Sometimes I have a hard time remembering to take my Kuvan, and then also not remembering to go back to a LowPro diet when that happens… and it shows when that happens! I’ve also had a tough time keeping up with my doctors and appointments just because life gets busy. I remind myself that it’s a privilege to have these opportunities and that I’m able to respond so well to Kuvan.

What’s helped you the most on your PKU journey?

What’s been helpful throughout my PKU journey is habits, the community, and having people in my life who help lift me up and gently remind me to take care of myself because they love me.

We have to ask—what’s your favorite low-protein meal?

It will always be potatos! Mashed, French fries, roasted!!

What are you excited about in the PKU world right now?

I am SO excited about the new trials and ideas being produced to help monitor and manage phe levels at home. I think all the opportunities that are about to be available is going to be life changing for so many!!

What would you say to parents of newly diagnosed kids—or even adults struggling with PKU right now?You are doing an AMAZING JOB!! Your kiddo will grow up and reflect on all the work you put in, all the love you poured out, and all the sacrifices that was made to help keep your baby healthy. It’s a long road, hard road, but it doesn’t have to be a bad road! You are doing the best you can, and they will thank you later!

How can people connect with you and follow your PKU journey?

You can follow my PKU Instagram account @Phe.groovy where I post and share cute graphics to help educate, spread awareness, and relate to others about PKU!

Thanks so much, Lib. You’re such a light!