Sounds like the start of a joke – doesn’t it? Unfortunately, as we all know by now, this isn’t a joke; and the punchline is the wait for a vaccine or at least herd immunity. So, what do we do in the meantime? Many of you are now experiencing what the immune-compromised community has mastered for years – only with heighten awareness and extreme escalation. In our house, we…
- Maintain strict quarantine (just the two of us for six months);
- Debate “who is the hostage” – with Stockholm syndrome;
- Spin the turntable of soaps as you CONTINUALLY wash your hands;
- Monitor your symptoms (replace those thermometer batteries!);
- Register for home delivery on EVERYTHING (yes, cat food too);
- Manically sanitize everything you bring into your home;
- Spruce up the house (to the extent possible with two untalented people);
- Read and binge-watch Netflix – each with increasingly less discriminating taste;
- Walk around the neighborhood…again and again and again;
- Unintentionally adopt Rear Window- or Burbs-like tendencies with your neighbors;
- Show off your COVID coiffed hair.
With mass unemployment, suffering charities, social injustice, El Derecho, hurricanes, and forest fires, the world is hurting; and there are more competing good causes than ever. This is all the more reason that we need to remember IDF. Not only does IDF do a lot to support the PI community in a “normal” year; but, this year, in particular, it has had a resounding focus on constant, uplifting communication and patient education forums. If it hadn’t been for John Boyle’s emails this spring, I likely would have spiraled. If it hadn’t been for the patient forums, Curtis would never have been allowed to eat take-out again. If it hadn’t been for the IDF experts, we wouldn’t have factual updates on potential vaccines and their effectiveness for the PI community.
Like everything, this year’s walk is VIRTUAL. Curtis and I are maintaining quarantine and walking around our neighborhood on the day of the Chicago walk. You are more than welcome to show your support by registering to be part of our team and walking around your neighborhood too. While we are abandoning some of our usual incentives, we do offer one….If we can raise $5000 by 6am on October 3rd, Curtis will do the walk in his zebra costume. Yes, he has done this before. However, it is a LOT different doing it in your own neighborhood, on the streets of Milwaukee – as opposed to in a park, surrounded by other zebra-clad walkers.
Thank you, IDF, for everything you do for our family and many, many others!
*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, my husband 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 is prone to any illness that is making the current rounds as well as myriad complications commonly associated with CVID. In general, he is very fortunate in that he is relatively 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.