More Than a Diagnosis: Hannah’s Journey with PIRD

For much of her early life, Hannah’s family knew something wasn’t right. As an infant, she experienced frequent infections, unexplained bruising, and dangerously low platelet counts. Doctor visits became routine, but answers remained frustratingly out of reach. Like many families living with rare diseases, they were left searching for a diagnosis while trying to make sense of symptoms that didn’t seem to fit together.

When Hannah was two years old, doctors identified a primary immune disorder, and she began immunoglobulin therapy. As medicine advanced and specialists learned more about rare immune diseases, her diagnosis was later changed to a primary immune regulatory disorder (PIRD). Unlike many primary immunodeficiencies that are primarily characterized by recurrent infections, PIRDs affect the immune system’s ability to regulate itself. Instead of simply defending the body, the immune system can become overactive, attacking healthy tissues and causing chronic inflammation, autoimmune disease, and other serious complications alongside an increased risk of infections.

Photo shared from Immunodeficiency UK

Living with PIRD brought ongoing challenges, including inflammatory bowel disease, ataxia, and lifelong treatment. Yet Hannah refused to let her diagnosis define her future. She completed university in 2010 and has continued to work with many employers. she encourages others facing rare immune disorders to stay open with loved ones, continue pursuing their passions, and remember that asking for help is a sign of strength, not weakness.

For families still searching for answers, Hannah’s story is a reminder that every diagnosis represents more than a medical condition. Those affected by rare diseases are people with dreams, ambitions, and a future worth fighting for. Early diagnosis, specialized care, and a strong support system can make a life-changing difference.

“In terms of hobbies, sports and interests, you may find that having a PID limits you in certain ways. It is different for everyone, but if you cannot do one thing, find another that you love. Do not let your diagnosis stop you from enjoying yourself.” – Hannah

That is why the Yellow Bear Foundation exists. Through education, advocacy, research, and improved access to specialized care, we are working to ensure that individuals living with primary immunodeficiencies receive the support they deserve. Every story shared helps raise awareness, every family reached strengthens our community, and every step forward brings us closer to a future where no one faces a rare immune disease alone.

Story adapted from Immunodeficiency UK