A Journey through PID - IDFNZ Patient Stories - Simone

Combating X-Linked Agammaglobulinemia, XLA

IDFNZ member Simone Jochem bravely shares her family's journey navigating X-linked agammaglobulinemia (XLA), a rare immune deficiency. Her first son, Jack, faced constant infections before his diagnosis, requiring extensive medical intervention. After Jack's diagnosis, Simone meticulously tracked his health, becoming an expert in his care. Later, her third son, Harry, was also diagnosed with XLA shortly after birth, allowing for early intervention with a smoother start. The family learned to manage infusions and treatments at home, creating a supportive environment. Simone emphasizes the importance of family teamwork and a positive attitude in facing the challenges of XLA. Despite difficulties, Jack and Harry thrive, showcasing the power of early diagnosis and dedicated care.