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Meet Sarah.

Diagnosed with PKU at birth, Sarah spent much of her childhood and young adult life keeping up with a strict diet and formulas to manage her condition. Now, she enjoys cooking with her husband, spending time with her pets and advancing her career.

Q: Tell us a little bit about you and your family.
I am 42 years old and live with PKU. I have seen a lot of change in medical treatment over my life! I have been successful due to my extremely supportive family. I live with my husband and our three pets, but have a close extended family and enjoy spending time with my nieces and nephew. I also have a brother and cousin with PKU, which made growing up with the PKU diet more fun, because I had family who shared my experiences.

“The most important thing I want people to know is – ‘Although PKU may be a challenge, it is not a limitation!’”

Q: What is the one thing you want others to know about living with PKU?
The most important thing I want people to know is – ‘Although PKU may be a challenge, it is not a limitation!’ In fact, I often encourage people to remember that the disciplines we learn while managing treatment leads to developing traits necessary for success.

Q: How do you like to stay involved in the PKU or rare disease communities?
It has varied throughout my life, but I love local and national PKU conferences. They are such a great way to connect. I also stay connected through social media and have built relationships with people living with PKU from around the world. Some of the most interesting messages I get are from places like the Middle East, where treatment isn’t as advanced yet.

Q: What makes you as Sarah “rare”?
I like to say that everyone has a completely unique story! Obviously, living with PKU has given me a story that is different from many of my peers, but my specific combination of life experiences is also different than anyone else in the PKU community. We all have something valuable to share – it’s just a matter of digging into your story.

Q: Name someone who is an inspiration in your life and tell us why.
My mother. Growing up, I never realized how much work she had to do to raise two healthy kids with PKU. As I got older, I began to appreciate what went into our medical care. I wouldn’t be where I am today if she wasn’t so dedicated to making sure I managed my PKU well.

Q: What is your favorite book and why?
I read the Bible more than any other book, so that one is my favorite. But I read A LOT – I have a book collection with 100s of books. Books I would recommend include The Spirit Catches You and You Fall Down by Anne Fadiman, The Corner by David Simon and Edward Burns, and Scarcity: Why Having Too Little Means So Much by Eldar Shafir and Sendhil Mullainathan.

Q: What’s the best piece of advice you’ve ever been given?
Professionally, by far the best piece of advice I have ever received was to never turn down an opportunity to speak publicly. It has been the piece of advice that has most helped me to advance my career.

Q: Tell us one goal you look forward to working toward accomplishing in the next few years.
I am close to completing a degree at the University of Chicago – I only have my thesis left to write! I also launched a brand recently called Prosperous PKU that I look forward to growing over the next few years. I speak and teach about diversity, authentic leadership, and wellness through the lens of own journey with PKU.

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