Beating the Odds with CVID

AFTER A RELATIVELY healthy childhood, Brandon Dillon began coming down with multiple colds and respiratory infections as a young adult. For a decade, his health continued to deteriorate, and in October 2010, after a nasty bout of pneumonia that resulted in a six-month hospital stay, Brandon was diagnosed with common variable immune deficiency (CVID). At 37, Brandon was active, athletic and busy climbing the career ladder; it’s an understatement to say he didn’t have “time” for an immune disease. “Growing up, I hardly ever got sick,” Brandon recalls. “Prior to my diagnosis, I battled the usual sinus infections that most of us with a primary immunodeficiency do, usually four or five per year. It seemed that every time I caught a cold, it would turn into an infection. This started happening when I was in my mid-20s. Years later, I was in the hospital being treated for a very severe case of pneumonia when I finally learned what was wrong with me.”

Understanding CVID

There are more than 250 primary immunodeficiency diseases (PIs) recognized by the World Health Organization. CVID is a frequently diagnosed immunodeficiency, especially in adults, and is characterized by low levels of serum immunoglobulins and antibodies, which causes an increased susceptibility to infection. CVID is thought to be due to genetic defects, although the exact cause of the disorder is unknown in the large majority of cases. Compared with other human immune defects, CVID is a relatively frequent form of PI, found in about one in 25,000 individuals.1

Finding Strength Through Adversity

An avid cyclist prior to his diagnosis, Brandon approached his diagnosis with the same level of determination he used as a competitive athlete. A short six months after being diagnosed, he completed his first full marathon, coming in just short of his goal time. Today, Brandon is determined to live a full life and is passionate about inspiring others to pursue their own personal best. “After my diagnosis, I was at a follow-up visit with my immunologist, and he told me that the goal with my treatment is to die with CVID and not from CVID, and that there was no reason that I could not continue to participate in the activities I love,” Brandon explains. “I took that literally, so when a friend asked me to run a full marathon with him that spring, I said yes.”

Brandon’s treatment plan includes intravenous immune globulin (IVIG) administered every four weeks in an infusion clinic, and so far, he’s been fortunate to suffer few side effects. “Having CVID doesn’t discourage me; if anything, it gives me more motivation,” he says. “My hope is that others who have CVID or another PI, who think that life as they once knew it before diagnosis is over, can clearly see that it doesn’t have to be.”

Brandon is quick to add that running marathons isn’t for everybody, noting that PI affects people differently: “I feel very fortunate that my body responds well to IVIG, and I’m still able to do the things I love.”

Although many PI patients struggle to maintain a busy schedule, Brandon currently works full time as a computer-aided design technician for a structural engineering company. He also recently competed in his first half distance triathlon. A proponent of patient support groups, Brandon credits the encouragement he has received from other CVID patients with keeping him motivated and optimistic. “I came across the group TriForBetter* online, and being a part of it has inspired me to keep up with my training and push myself to set higher goals,” he explains. “Having the ability to see others who are dealing with the same illness that I am, living active lives, truly keeps me going.”