After six years of misdiagnoses and crushing disappointment, a doctor finally figured out that Katie had a rare genetic condition centered around a protein called C1 inhibitor. So many emotions flooded through Katie. She finally had a name for her excruciating pain and weird swelling: hereditary angioedema (HAE).
Though she didn’t know it at the time, her diagnosis would also lead Katie to a group of caring, enthusiastic people dedicated to making sure other people don’t have to go through what she did. She calls them her “HAE Family.”
According to Katie, HAE Day, part of the mission of the Hereditary Angioedema Association, is so much more than she expected it to be. Every year in May, Katie honors her own journey—and the journeys of everyone with HAE—by participating in HAE Day. Her aim? To “cover the world in smiles.”
Read more of Katie’s journey from heartbreaking diagnosis to the brave HAE fighter as detailed by Global Gene’s featured piece.