Packing PKU for the Ride
April 18, 2023
“No meat, dairy, seafood, eggs, nuts, poultry, peanut butter, soy, grains, or diet sodas” …. I rattled off a portion of the foods I could not consume. My friends’ jaws dropped.
The above list was an introduction to memorizing lines; a benefit for my future lived in theatre. Learning to spell PHENYLKETONURIA as a child began a love of spelling and vocabulary. From the beginning, PKU came along for the ride.
I was diagnosed with Classic PKU seven days after my birth and immediately referred to the University of Minnesota and Dr. Robert Fisch, a specialist in PKU and my personal hero. A survivor of the Holocaust and a highly intelligent man, Dr. Fisch laid a foundation for my care.
I was on the low protein diet for PKU and medical formula lifelong. From diligent parents, to daycare providers, my elementary teachers, middle school instructors, and family/friends who ensured there was always, “something Kristin could have”, I was a physical representation of “it takes a village”, and I remain grateful to the village who raised me and sought to learn PKU.
After graduating high school in Central MN, I attended school for Musical Theatre in NYC and remained in the city for six years. I packed my medical formula for excursions in the city and purchased bottles of water from the street carts or the nearest delis to prep on the run.
In 2010, I relocated to Oklahoma City to pursue further education. I was followed by OU Children’s and later offered the chance to partake in a clinical trial for Palynziq (then called PegPal). Having not responded to Kuvan, I was hesitant. Choosing to do trial proved to be a crucial journey. I ended up a full responder.
With Palynziq and blood draws now my full forms of treatment, I am eating a free diet. I received the call that I could consume protein while boarding a plane to teach abroad in Italy. It was a vastly different call than the one my parents had received upon my diagnosis. In its own way, with a call now made to me, my journey had come full circle.
I have PKU, and until there is a cure, I will always have a form of treatment, levels to draw, and supplements to take. Whichever direction I land next, I am thankful to be healthy, for extensive developments in PKU treatments, the PKU/rare disease communities, and to actively own & advocate for PKU; the three letters who’ve come along for the ride of life.
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