THE UNSEEN DISEASE

Once I found out I was pregnant, I told my PKU team right away, and they let me know to start weekly blood work to monitor my phenylalanine levels throughout my pregnancy. When I first got pregnant, I was eating 25g of natural protein a day, and getting 40g from my formula for a total of 65g a day. I was also taking kuvan and palynziq to try to get my levels down. I started diligently tracking my protein intake. I found it helpful to use ChatGPT, and I would enter something l

Wow, I really was getting to the point where seeing two lines on a pregnancy test felt too good to be true. I was always hopeful, and never doubted that my God would give us our child at the perfect time, but when I saw those two lines on new year's day, I was in SHOCK. If you're not familiar with my fertility journey, here's the spark notes: We started trying for a baby in November 2022 In December 2023, I went to a women's health clinic, and was put on progesterone to regul

We're back with another PKU Spotlight! This time, I'm so excited to interview Aly! She has been such an encouragement to me in both my palynziq and fertility journey! Let's jump right in! Hey Aly! Let’s start off with a little intro. Can you tell us about yourself? I’m a 29 year old mom of one, soon to be THREE! Twin girls coming via surrogacy in October. I have classic PKU! I carried my son, maternal PKU and all, after doing IVF because of infertility. We started IVF transfe

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...

It’s been a while since I last blogged. Not because life’s been particularly exciting — unless you count fighting with insurance,...

Add this to the list of things doctors don't tell you about new treatment. This never even crossed my mind. But it makes sense. Since...

Hey everyone! I have been so blessed to be a part of so many advocacy opportunities including podcasts, university classes, pku studies...

When we think about new advances in medicine we usually think about going forward. However, as we make medical changes that can...

My last post was about my first day of Palynziq. I have now been on the treatment for 11 months and I have some real updates! The...

My last few posts were interviews with people who were at different points on their journey with Palynziq. It has been great to follow...

Happy Saturday! This week's Palynziq Spotlight is with Alina! I love how social media can bring people from all over the world together...

This week's Spotlight is with Bobby! We connected through my PKU instagram. Check out his interview below: How long have you been on...

Hi everyone! This week will be the start of my Palynziq spotlight series, where I'll be interviewing different PKU people about their...

First of all, I'm not qualified to define Palynziq, so let me pull one from the Palynziq website: "When the PAH enzyme is missing or...

If you're Canadian with PKU, or even just a Canadian that has consistently large medical bills, you're probably thinking to yourself:...

And we're back! It has been awhile since I've made a blog post, and I've been doing a lot of spotlights lately, which have been great!...

Hi everyone! This week's Maternal PKU story is from Jill, who experienced what it is like to have children both on and off diet. I'm...

Happy Monday! We'll be continuing our Maternal PKU Series and hearing from Camille and her story navigating the process. Thank you all...

Hi Everyone! If you've been following my blog for awhile, you've been made aware of the hardships that come with having a metabolic...

Happy Monday! I'm so excited to share another PKU Spotlight segment with you! Today I'll be interviewing my friend Mariah! We met at PKU...