I began working on this website in November 2018. It was actually complete by January 2019, but then I did not do anything with it. Even though I was not doing sharing, promoting, or using this site any way I have not yet been ready to take it down.
I created this site because Instagram made me realize how much we in the rare disease community need to be inspired.
Let me step back. I had always prioritized health and fitness in my life. PKU made me very conscious of what I ate, and I remember being active and athletic from a very young age. My idea of fun was playing ball in the backyard, biking the neighborhood with friends, and jumping for hours on the trampoline in the basement. When I got older my exercise turned into competitive sports and then long distance running. Five years ago, I became more serious about taking care of my mental health. I was always on diet, but I started following my PKU diet very closely. I struggled to integrate low protein foods that were objectively healthy. In order to hold myself accountable, I began posting pictures of what I was eating on Instagram. There were very few #phenylketonuria posts back then and I felt strange being so public with my medical condition.
But fast forward a few years, and my Instagram page kept growing. I got messages from people with PKU around the world. Some were parents of newly diagnosed babies, others were people from other countries where treatment was not as accessible as in the US, and some of these messages were from other struggling adults. The one thing everyone had in common was the need for hope and inspiration.
As I was growing up, there were a lot of things I thought were not possible for me because of PKU. I was told I would always be terrible at math. Later, I became the CEO of a small financial institution and used a lot of math and numbers in my daily life. I thought I would never do well academically. Now, I am working on my second master’s degree at an elite school. I also thought I would never eat real forms of protein. That very impossible experience is also now made possible because I responded well to enzyme therapy.
But that transition to enzyme therapy is why I stalled on the creation of this site. Once I responded, there was a lot more to learn than I realized. As a person who has stayed on diet for all of my adult life, I had already known that PKU is about much more than food. It is about social interactions, discipline, standing for what is right for oneself, mental wellness, self advocacy, and knowing oneself. I had to relearn some of these things. I have written about this transition in other places like on The Mighty and on Medium. I may write about it more here.
I wish I had seen more inspiration when I was younger. I heard lots of stories about why I should stay on diet and why I needed to keep my protein levels low. I did not hear many stories about what was possible if I did that. Maybe it was because medical care when I was younger was not what it is now. Most of my peers were taken off diet at an early age, and that has consequences. People with rare disease need inspiration too – life is often what you make of it. Everyone has limitations in life, but we also have options about how we handle those limitations.
I still think this site is worthwhile, even though my treatment allows me to no longer have to wrestle with the day to day dietary struggles. My perspective and story has changed, but I hope this site can be useful.
I will also be honest about this website. I have not yet seen anyone successfully run an independent PKU site over a long period of time on their own. I have seen lots of great blogs written by others with PKU come and go. Mostly they end up dormant because we are a relatively tiny community and it takes time to build an audience. It also takes time to create thoughtful content. It is not easy to dedicate that time to a website while managing a medical diet, or even just with a busy life. I don’t blame anyone who started a blog or resource for people with PKU who found it unsustainable. Most of our community content lives in free Facebook and Instagram groups. We have other great resources, but those resources are subsidized by grants and medical companies and fundraising. It is not easy to keep something like this going when life has other responsibilities and it feels like social media algorithms work against building reach. I also do not have a strategy to monetize these efforts in order to sustain this right now, other than maybe writing a book someday. The goal of this site still feels important though, and if you think so too – please head over to the “About” page and sign up for email updates so you can be notified when I post something.