by Hannah the Zebra
Hi there. I’m a little late to the party, because, well, Easter was really early this year, and I’ve been trying to hibernate since then in a vain attempt to catch up on my sleep and recover from the exhaustion that Holy Week always brings.
But I need to announce that April is CVID Awareness Month!!!! Or, more broadly, PID (Primary Immune Deficiency) Month. It’s the month to tell everyone you know about CVID and, if you are comfortable in doing so, sharing your particular story.
Since CVID is a rare disease (1:50,000), most doctors, let alone average people on the street, don’t know about it. Which means that they don’t know how to recognize the possible symptoms, and thus don’t think to refer patients to an immunologist for testing and diagnosis.
All of which means that many of us die before anyone has figured out what is wrong, and for those of us lucky enough to be diagnosed, our diagnosis is often so far into the disease that we start treatment much, much sicker than we need to be.
So. Spread the word. Educate as many people as you can. Even if you don’t have a CVID diagnosis, you can be good will ambassadors and information bearers to everyone you know. Knowledge really is power, and we need as much power as we can get!
Here are some websites you might find helpful and informative. If you aren’t already familiar with the Immune Deficiency Foundation, their site is the fundamental site for information on Primary Immune Deficiencies, treatments, information, locating a physician, support, conferences, the works.
Another site that has information, resources and links is http://www.cvidawareness.org. It also has a Zebra Strong Store with links to buy things like T-shirts and mobile phone cases that help spread the word about CVID. This year I’m going to finally order a T-shirt and wear it to help raise awareness. I’m hoping to at least get a few questions along the line of, “So……. what’s CVID?” And then we can go from there.