Going back on diet after 10+ years was hard. I’m so proud of how far I’ve come—back to clinic, protein levels in control, with two healthy babies at home. But challenges with PKU never go away; they simply change with every phase of life and treatment.
These stories reflect my journey. I hope they bring encouragement to those who are struggling and caution to those wise enough never to have faltered.
November 23, 2018
The ‘Preconception Diet’ (or Pre-Con) is the first step toward a healthy PKU pregnancy. I was clueless about how difficult it would be and how much it would change my life. But if i can do it, so can you. One tip? Go in with eyes wide open...
September 26, 2018
When I attended my first PKU conference, I was hit hard by regret and emotion. I asked myself hard questions: why did I spend so long off diet? And more importantly, was there anything that might have helped me stay on track? Here’s what I came up with…
September 05, 2018
Unfortunately, i have too much experience in this area. But the real answer is scary and difficult to explain: I don’t know. Mental fog, memory issues, and anxiety are common, but it’s the unanswered questions that are hardest to swallow...
August 15, 2018
PKU was easy as a kid, but social pressures in high school and college got the best of me. I was ‘off diet’ for over a decade and getting back on track was extremely difficult. Protein was my addiction, and even now l don’t claim to be an expert. I’m “in recovery” and always learning…