Episode #81: John Boyle
John Boyle was born with a form of primary immunodeficiency called X-linked agammaglobulinemia (XLA). After being diagnosed when he was six months old, John was put on an antibody replacement therapy. Because of his early diagnosis and maintenance therapy, John has enjoyed a full life. He received his Bachelor’s degree from Boston University and a Master’s degree from Notre Dame of Maryland University. For the last two years he has served as the President & CEO of the Immune Deficiency Foundation. He resides in Maryland with his wife (Tara) and his 10-year old son (Johnny).
John Boyle was diagnosed with X-linked agammaglobulinemia (XLA) in 1978, when he was just six months old. Fortunately, at the time, relative to other forms of primary immunodeficiency (PI), XLA was pretty well understood. There was also a treatment to help manage the condition: immunoglobulin replacement therapy. It’s the same treatment that John relies on to this day, and it helps his body replace some of the antibodies that he doesn’t produce naturally. On today’s episode, John and I talk about the routine management of his condition that allows him to live with minimal symptoms, and how taking care of his health was instilled in him at an early age. We also talk about why his parents worked to create the Immune Deficiency Foundation, his work with the foundation today, and why people often show up to events, walks, and conferences wearing zebra patterns...or sometimes, in full zebra costume. Finally, we talk about how, after years of being attuned to his physical health, he realized it was important to give some attention to his mental health, too.
“You’ve gotta recognize that it’s not always the thing that you expect. Sometimes it is that zebra. Sometimes it is that rare one in a million—or more—diagnosis.”
Here are some of the things John and I chatted about:
The respiratory infection he got at six months old, and how it led to his XLA diagnosis
The face of primary immunodeficiency at the time: David Vetter, the boy in the plastic bubble
How, when compared to other forms of primary immunodeficiency, XLA is relatively simple
The gene involved with XLA, and the science (in simple terms) of why he lacks antibodies
What immunoglobulin replacement therapy is, and how he’s watched the treatment develop
Dealing with minimal symptoms, but putting effort into managing his condition day to day
Learning from a young age, through his parents and care team, to keep himself healthy
His parents’ work to create the IDF after finding their “new normal,” once he was diagnosed
The foundation’s areas of focus, including education and advocating for patient populations
The concept of “Think Zebra,” and why many people with PI embrace the zebra identity
What the IDF is working on going forward, and why it’s important to deepen its connections
The value of recognizing both the commonalities and differences among immunodeficiencies
Why he decided, after dealing with anxiety, it was time to give his mental health some attention
Breaking down the stigma around mental health, and why it’s important for the PI community
In learning about John’s condition, among others, how his son has gained empathy for people
“Not everyone knows when they get that diagnosis what their quality of life should be. And so we’re here to help bridge some of those gaps, fill in some of the missing pieces, and make sure people know what the world can look like, and help to maybe raise their sights.”
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