Lillian Isabella (New York | PKU, Medical Foods)
Board member, National PKU Alliance

Lillian recently began her Master’s in Narrative Medicine at Columbia University. She shares how PKU management has shaped her life, education, and career path.

Kaylaa White (Virginia | Crohn’s Disease, ONS)

Diagnosed with ulcerative colitis in 2020 and later reclassified with Crohn’s disease in 2023, Kaylaa experienced rapid disease progression that required complete bowel rest and more than a month of total parenteral nutrition (TPN) through a PICC line. After hospitalization, she depended on medically necessary nutrition support for over a year while unable to maintain adequate oral intake. When her insurer stopped coverage and her supplier left Virginia, she encountered significant barriers to accessing the products she needed—often paying out of pocket and traveling long distances for limited availability. Now living with a permanent ostomy, Kaylaa serves as Co-Chair Elect of the Crohn’s & Colitis Foundation’s National Council of College Leaders and plays a leading role in the Color of Gastrointestinal Illnesses initiative, advocating for equitable representation of Black women with ostomies and improved access to essential medical nutrition.