Dale is a graduate of Calvin College, as are his wife and three daughters. He was diagnosed with a rare disease in 2012. He enjoys reading about science and has a particular interest in climate change. If he were an ice cream flavor he would be butter pecan because he is a little old fashioned and a little intellectual. He has held several leadership positions in commercial HVAC engineering and design at Trane Creative Solutions. One of the challenges of having a rare disease has been giving up things that he used to do including running and playing basketball. He would like to challenge people to be curious and be willing to adjust their definition of what normal is.
Q: Tell me more about your rare disease and how you would define it?
A: I was diagnosed in 2012 with an immune deficiency called “Good’s Syndrome.” Good’s Syndrome is defined as thymoma (a tumor that originates from cells in the thymus) with immunodeficiency. The cause of it is unknown, it could either be due to a genetic defect in my bone marrow or it could have autoimmune causes. The immune deficiency makes it easy for me to get sick and develop potentially fatal infections. There are currently no cures. However, I am blessed to be receiving IVIG infusions every three weeks that boost my immune function.
Q: What does daily life look like for you?
A: I receive infusions for 2-3 hours every 3 weeks. I can do this at work, which is both convenient and mildly disruptive, mostly because I need to pre-medicate with Benadryl which makes me sleepy. I still deal with bronchitis and sinusitis, especially in the winter. I can usually work during these bouts although I do so with reduced energy. Days and weeks sometimes grind on.
Q: What was your diagnoses process like? Did you ever get misdiagnosed?
A: It was a long process. I experienced two decades of recurring sinusitis and bronchitis, worsening over the years until finally in 2008 (age 44) a CT scan revealed a tumor in my chest that turned out to be an invasive thymoma. Following resection, I had radiation and thought all was well. However, a life-threatening PCP pneumonia followed, and then 4 years later another life-threatening strep pneumonia and empyema, with diagnosis of Good Syndrome (finally!) in 2012. I am thankful for the infectious disease doctor who thought to order an IG panel. Based on the low blood antibody levels in the test he was able to identify the problem. It was both a relief to have a diagnosis that explained everything and sobering to know I had a serious condition that I would live with the rest of my life.
Q: What is the hardest part about your condition?
A: Having to give up things that I use to do including running and playing basketball. I don’t plan to work as long as I once did, and I have to be careful around animals and other sick people.