As most of you know, my husband Curtis has a unique immune system. (One in five million according to his immunologist’s latest genetic analysis. It’s good to be special – not that special.) His immune system is severely compromised. While COVID is what sent us into quarantine, that’s far from what now keeps us here. It’s everything – pneumonia, bronchitis, sinus infections, upper respiratory infections, etc. However, our team of doctors has outlined protocols for us to be able to safely interact with people OUTSIDE*. So, summer is our chance for normalcy, and the annual IDF Walk for PI is just the opportunity!
This year marks the 10th year for the Walk for PI, and Team CuKo has walked in every one of them. This year, IDF has also moved a nationally sponsored walk directly into our own backyard; the Milwaukee County Zoo will be hosting the Walk for PI on Saturday, August 5th.
*Some of you may be wondering why is this event "safe"? In general, all activities have risks. Any outdoor activity is safer due to the constant air movement and the ability to comfortably distance ourselves. We continue to wear (double) masks when we know we are going to be interacting with others. We hope the ability to see one another outweighs any awkwardness of the masks.
**The phrase “zebra” stems from a familiar saying: "when you hear hoof beats, think horses, not zebras." In medical school, doctors are taught to focus on the likeliest possibilities ("horses") when making a diagnosis, not the unusual ones ("zebras"). However, sometimes physicians need to look for a zebra. Patients with primary immunodeficiency diseases (PID) are the zebras of the medical world.
In this context, Curtis is our zebra. Curtis was diagnosed with Common Variable Immune Deficiency (CVID) at roughly nine years old. It is a genetic condition; and, as treatment, he receives monthly infusions of IVIG - a drug that essentially replaces his immune system on a monthly basis. (It is administered intravenously over the course of several hours - approximately four in Curtis's case.) As a result of his condition, he has developed a myriad complications over the years – some commonly associated with CVID, while others make him our “unicorn zebra”. In general, he is very fortunate in that he is comparatively healthy. Many patients with PID suffer from repeated illnesses, resulting in frequent hospital trips and the inability to attend school or work on a regular basis.