If there is any take-away from this short series on PKU through the decades of my life, it is that PKU has changed a lot in 41 years. I have less to write about in this current decade, even though so much has happened for me. But it is recent history – all of you as readers are also living life with an understanding of medical advancements and the current struggles. I started Kuvan in this decade and was on it for eight years before transitioning to Palynziq. My Palynziq story can be found here, in a video created by Biomarin.
My PKU story has changed the most in these recent ten years because of expansion of food options and drastic treatment changes. When veganism finally became common in popular culture around 2010, I found accessibility to be less of a challenge. Buying a gluten free bread, vegan cheese, or coconut milk yogurt or dessert improved stress levels. Although specialty vegan foods are not inexpensive, I did not have to worry about running out of medical foods nearly as much as before.
But most significantly, this decade was the time in my life when I embraced my entire PKU story. When I spoke around the country at patient events (in pre-COVID times, and hopefully again after COVID), I would often share this favorite Brene Brown quote: “When we deny our stories, they define us. When we own our stories, we get to write a brave new ending.”
When I decided to own my full PKU story, with all its episodes of instability, impulsive decisions, periods of poor performance, outbursts of tears and frustration, as well as the discipline, the character, the authenticity, the conviction that life does not end if I did not follow the crowd all the time that PKU gave me, many other situations changed for me. I stopped apologizing for having PKU and started expecting my medical needs to be accommodated.
When I did this, I was able to eat better. I was able to be proud of my ultra-strict diet that I know non-PKU people could not survive for a week. I no longer felt bad when people felt sorry for me, but proud that I had developed a discipline and inner resilience they would never understand. I stopped worrying whether people would see my illness instead of me. And I found others rarely focused on the PKU when I was bold and brave about my condition. It opened doors for me. I gave a TEDx talk and shared my PKU story. I had the opportunity to speak at patient events. I overcame my fear of applying to a school I did not think I qualified for, and I even wrote about PKU in my application essay. I am currently writing a book on life with rare disease.
This is not to say that everything about PKU in the last decade has been wonderful. PKU, or any chronic illness or rare medical condition for that matter, is a battle in many ways. But embracing it has been one of the most important things I have decided to do on my journey. At the same time, this has become much easier as medical research, new treatments, a more accepting society, and better food choices have become reality. This is way advocacy is still so important, and why we need to participate in our community. Our voices are stronger together. PKU, although it does not define you, does develop you into the unique and special person you are.
For more thoughts on living well with PKU, see my virtual presentation on Life Lessons with PKU.