Meet Bettina, who is living with Hereditary Angioedema (HAE) in Malahide with her husband and her three sons. Bettina loves reading, crafting, and is a part of a Women's Shed for crafting where she enjoys exchanging stories with women of all ages. Bettina also loves to travel and is recently back from a family trip to Japan. Bettina has never let her HAE hold her back from enjoying life and fulfilling her dreams.

Bettina was diagnosed with HAE, a rare condition that causes severe swelling, at the age of 15. Her journey was not an easy one, with many doctors misdiagnosing her condition as allergies and even suspecting abuse due to the facial swellings. It took a chance encounter between her doctor and a consultant to finally get her correctly diagnosed.


Now, Bettina is the Irish contact for HAE International group and a proud mother of three sons who have all also been diagnosed with HAE. She advocates for awareness and education about the condition and encourages others living with HAE to live as normal a life as possible, making the most of their good days.

Her involvement in this campaign aims to educate the public about rare diseases and to inspire others living with similar conditions. As Bettina puts it, "If you dream it, try and do it. If there’s a way to get around your illness, do it.”

Bettina describes her experience of living with a rare disease as "resilient, hopeful, compassionate, adventurous."

Photography by Julien Behal