“Hi! My name is Sam! Born and raised in BC, Canada, now living in Washington state! When I was two weeks old I was diagnosed with Phenylketonuria, a metabolic disease that hinders the body from breaking down phenylalanine, an amino acid in protein. If phenylalanine doesn’t get broken down, it can be poisonous to the brain and cause brain damage. I’m on a strict diet of no meat, no dairy, no nuts, no soy or tofu, no legumes, or other high protein foods, and the other foods I eat have to be monitored for protein intake. Naturally, I can break down 3-5 grams of protein. With pills, I can take 6-8 grams.
My parents took really good care of my brain and taught me how to maintain my diet while growing up. I have an Associates degree in Hospitality Resort Business Management and a Bachelor of Arts in Biblical Studies and Music Ministry.
I have a blog called theunseendisease.com where I write about my experiences with PKU so I can give others support and make them feel less alone, while also comforting new parents and giving a voice to those with rare diseases. I decided to do this because growing up, I didn’t have a community of people with PKU or rare diseases that knew what I was going through. Also, moving to America from Canada made me very aware of the different healthcare systems, and made me want to stand up for accessibility to medicine in both countries!
Thank you, Rare Patient Voice, for allowing me to post about my PKU, and being an advocate for those who need it!
Sam Balenzano — Classic PKU”