I started out with places like Wikipedia. Wikipedia, of course, is a controversial place for information since you don’t know really who the information source(s) is/are, and you also often wonder what’s been omitted as much as what’s been printed.

Over time, I have come to learn that Wikipedia’s definition is pretty accurate for CVID; and that’s the first place where I read that ITP is often a pretty common experience for people with CVID. But being a cautious information user, that was just a first stop for me initially, sort of like hitting a dictionary to figure out what the heck CVID actually meant.

NIH to me is the most logical place to begin any medical research. But when you start off with a simple search on CVID, you get a lot of journal article references, which are great if you’re a researcher or a medical professional (and can get access to the articles themselves, which is not always possible without a subscription), but not terribly user-friendly if you’re just an average person.

As my knowledge has grown, I have revisited NIH’s site and used it; but as a person who has earned a living making websites work better, I wonder why NIH doesn’t make its site more user-friendly for regular people. At present, it’s geared much more towards medical professionals. A-Z Health Topics, which is found under the Health Tab, works much better for regular folks, but you have to know that it’s there — and if you’re not part of the A-Z, well, what do you do next? (In my case, ITP made the A-Z list, but CVID did not.)

And when I finally *did* find info on CVID, it was listed under Primary Immunodeficiency (a name I didn’t know when I first started out) — and it was located under NICHD! One would think info would emanate from NIAID. Understandably, no disease or condition is a medical island unto itself: but sometimes, the logic for figuring out who would be the lead dog on my condition (and thus where the info may be found) is a little mystifying. It’s not as clear-cut as researching, say, breast cancer.

If you perform a simple search of “CVID and ITP” on Google, there are plenty of journal articles where there are subjects with both conditions, yet another clue. As with NIH, I read a bunch, though I honestly had trouble understanding some of the terminology. (I’m not a doctor, nor do I play one on TV ;-) I checked clinical sites for information; there were plenty of times I began to wonder whether some of the medical sites were just rehashing the same basic verbage.

The Immune Deficiency Foundation’s website pretty much cinched it for me — and in words I could actually understand. I have since found bits and bobs of the info in other places, but in truth, for something like this, it’s such a godsend that there are organizations there with the information presented in ways the average layperson can understand.

I appreciate that the medical community often prefers to use language that is impervious for us mortals; but it’s a relief when organizations that serve the public take the time to make the information clearer. Would that NIH did this better.

The community on the UK Primary Immunodeficiency Association is probably the most active community I’ve found. If memory serves, there were plenty of people there who were talking about ITP and CVID in the same breath. I found people on there who were extremely knowledgeable and helpful.

And information that helped me figure it all out came from a least expected place: the aforementioned parenting list (DC Urban Moms.) I reached out to the list, mentioning my medical condition. As it turned out, one mom on the list works in clinical trials at NIH and knew another nurse practitioner who works with some CVID clinical trials. Another person had a close relative with CVID and shared some fresh international journal articles which I, in turn, shared with my immunologist — they were news to her.

In short, you have to be especially creative and open with your research when you have a condition that is not exactly a household term, like diabetes or cancer. You just never know from whence your next big clue will come.

I’d like to clarify something: you say “So I began to research ITP and CVID, and I came to find out that people with CVID often *do* end up…” Where did you do that research? Journal articles, user communities, sites like the Mayo Clinic database?

Thank you so much for joining us here.