Beth Ruff (She / Her)
State: Pennsylvania
Chronic Condition: Hereditary Pancreatitis
My son was diagnosed with hereditary pancreatitis in 2022. His grandfather and uncles also have the condition. It is a progressive disease that leads to chronic pain and the destruction of the pancreas.
As a caretaker for my son, I have a new appreciation for the chronic health problem. A new perspective on how those with "rare" diseases are treated, and including the price of necessary drugs to manage the condition.