It is rarely mentioned: Anna and Paul Kamionka

In the latest episode of the podcast "It's Rare to Talk About It," we host Anna and Paul Kamionek, parents of five-year-old Ernest, who has phenylketonuria. Our guests talk frankly about the first days after the diagnosis, the challenges of daily life with the disease, and how they fashioned a new family reality around their son's specialized diet. We also talk about the need for systemic support for families affected by phenylketonuria, the insufficient public knowledge about the disease, and the initiative to establish an association that could integrate families and help them at different stages of life.