Meet Ian, a remarkable Changemaker hailing from Portlaoise. Ian works for a tech company and leads an active life centred around his 11-year-old twins and their sporting pursuits including hurling. However, beneath the surface of his everyday routine, Ian is living with X linked agammaglobulinemia (XLA), a primary immunodeficiency disorder (PID) that prevents affected individuals from making antibodies. Ian was diagnosed with the rare disease when he was around six years old

The effects of this condition are far-reaching. From fatigue and the challenging necessity of regular infusions to the constant vigilance against infections, living with XLA requires resilience and a positive mindset. Despite the challenges, Ian remains a 'glass-half-full' person, sharing his experience to raise awareness and help others who may unknowingly be living with PID.

His message is simple but powerful: Life goes on, even with a rare illness. You can lead a fulfilling life, travel the world, raise a family, and seize opportunities. Ian's story underscores the importance of early diagnosis and the need for healthcare professionals to consider rare diseases like PID as potential underlying causes of persistent symptoms.

Ian's involvement in the 'I Am Number 17' campaign aims to inspire others living with a rare disease, enlighten the general public, and educate healthcare professionals.


In Ian's own words, his experience of living with a rare disease can be described as "Fatigue", "Challenging", "Resilience", and "Emotional".

Photography by Julien Behal