Taking chronic granulomatous disease in stride

For Matt Kemmerer, 32, of Fairfax, Iowa, chronic granulomatous disease (CGD) is just another part of who he is. Diagnosed with X-linked CGD at six months old, he has not let the condition hold him back from living a full and active life.

“My wife and I are really social,” said Matt. “We get together at our friends’ houses a lot and, if it’s nice outside, we’ll play lawn games or have a fire and a hot dog roast. We might even have a corn hole bean bag toss.”

As a lifelong baseball enthusiast who played competitively throughout high school, Matt enjoys going to local minor league games and making a trip to Chicago each summer to catch a Cubs game at Wrigley Field is a cherished tradition.

When Matt talks about the challenges that he has had with CGD, he is matter-of-fact. He said that he has had several serious illnesses over the years, including bouts of pneumonia, as well as Nocardia and Aspergillus infections. The latter infections led to lung surgeries, and unfortunately, parts of his lung had to be removed.

“I’ve gotten used to hospital visits and getting sick from time to time,” said Matt. “I have never felt scared because I’ve been dealing with it since I was really young.”

Matt credits his parents with staying on top of his infections and taking him to the University of Iowa Hospital at the first sign of trouble.

“My mom is a natural worrier anyway, so that helps,” he jokes. “However, it never became overwhelming. My folks were really good about it, and dealing with CGD just became part of our routine.”

Like many children with CGD, Matt had more healthy days than sick days. He has been taking standard daily prophylaxis since age eight. As a result, he said he had a pretty “normal” childhood. He recalls many happy moments over the years with his parents and older brother, Ryan, who does not have CGD.

Matt has been married to his wife Mandy since 2008, and he said he has been grateful for her steadfast love and support. In fact, he knew Mandy was “the one” after their first month of dating.

“It was weird timing because we had just started dating, and then I got really sick,” said Matt. “But Mandy came to the hospital every day to visit me. I knew right then that I would want to marry her.”

Matt is also thankful that they both have flexible jobs, which have enabled them to handle everything together, including his CGD, as a team.

Matt acknowledges that everyone’s experience with CGD is different, but he hopes to show that it is possible for patients with CGD to lead full and happy lives, well into adulthood. For the most part, he feels like he’s no different than anyone else.

“I’ve never singled myself out because I have CGD,” he said. “I’ve certainly had times in my life when I needed to worry, but I never let it get to me. I’ve always been that way.”

Thank you to Matt and Mandy for sharing their story!