Fighting Fatigue and Infections: Jennifer’s Journey to a PI Diagnosis

For years, Jennifer Landry Harry experienced constant infections and fatigue that didn’t seem to make sense. “I had repeat sinus, throat, and respiratory infections,” she recalled. “My lymph nodes were always swollen, and I just couldn’t seem to get better.” Despite being vaccinated, Jennifer contracted pertussis in her 20s — a clear sign that something was off with her immune system.

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Primary immunodeficiency (PI) is a group of rare disorders in which part of the body’s immune system doesn’t work properly. These conditions are also called inborn errors of immunity because they’re usually caused by genetic changes present at birth that affect how the immune system defends against infection.

A Long Road to Answers

Jennifer’s path to diagnosis wasn’t easy. She went from one specialist to another, searching for someone who could explain why she was always sick. “It was a lonely, isolating experience,” she said. “Some people thought I was being dramatic or making it up.”

Amid the uncertainty, one doctor provided unwavering support. “My primary care doctor that I found at 18 was my ride or die,” Jennifer said. “He believed me wholeheartedly and never gave up until we found an answer — and he’s still with me on this journey years later.”

Relief in a Name

Finally, Jennifer was diagnosed with an antibody deficiency — a type of PI. This condition means her body doesn’t produce enough antibodies, or the ones it makes don’t work properly, making it harder to fight infections. “I was almost relieved,” she said. “For so long, I felt like I was crazy or overreacting. It was so validating to finally have a name for what was wreaking havoc in my life. I was scared, too, but mostly relieved.”

Adjusting to Life With Primary Immunodeficiency

Since her diagnosis, Jennifer approaches life differently. She focuses on getting enough rest, eating a balanced diet, and staying hydrated: “I try to slow down and make sure I’m not running myself into the ground.”

Living with PI has also taught Jennifer important lessons about relationships and self-advocacy. “Not everyone in your life will understand,” she said. “You have to prioritize the people who do try to understand what we deal with and support you in the ways they can.”

Words of Encouragement

For others who are newly diagnosed, Jennifer offers a message of hope. “While having a diagnosis can feel scary, it’s also a road map to help you,” she said. “Sometimes, finding the right treatment or routine takes trial and error, but that doesn’t mean it won’t work. When you find what does work, it makes a world of difference.”

Jennifer’s journey with PI is ongoing, but she continues to live fully — she travels the world with her family, bringing her subcutaneous immunoglobulin infusions along for the ride. Her story shows others with PI that understanding and managing the condition is possible with patience, support, and persistence.

Talk With Others Who Understand

On myPIteam, people share their experiences with primary immunodeficiency disorders, get advice, and find support from others who understand.

Have you or someone in your family been diagnosed with a type of primary immunodeficiency? Let others know in the comments below.