Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
I have systemic lupus and, more recently diagnosed, CVID, for which I am now getting weekly subq infusions. Everything is going well, thanks in large part to this support group.
But I have a basic, bonehead question. Is CVID considered a disease? A "condition"? A syndrome? A disorder? I'd like a simple 1-sentence description to use when I have to tell someone (another doctor for instance) what I have.
But I have a basic, bonehead question. Is CVID considered a disease? A "condition"? A syndrome? A disorder? I'd like a simple 1-sentence description to use when I have to tell someone (another doctor for instance) what I have.
tortoiseuk
I call it simply an immune deficiency. Everyone understands that.
kelli1b
I say a "genetic immune deficiency similar to the bubble boy but not as severe"...weeds out all those "do you have aids" questions. For the most part I don't even bother explaining and I live a pretty normal life and most people don't know I'm ill.
novelidea
Thanks, Kelli and Tortoise. Kelli, I agree about not bothering to explain for the most part, but I recently had to answer the routine "new medications?" question at my dentist's office. (He had never heard about CVID by the way, but was interested and wanted to look it up, he said.)
markincleveland
Kelli, I HATE the comparison to bubble boy. I think it make much less "normal" than most of us are, I fear one of my kids will apply for a job and see PI attached to them associate the two
kelli1b
Unfortunately I've found it is the ONLY thing that people can relate to in the least. When you say "My immune system is messed up"....well frankly everyone says that and thats why "they" get sick alot. And the whole "part of my immune system is missing or defective and" blah blah blah is simply too much and eyes get glazed over and you've lost them. I've yet to find an explanation that works so well.
novelidea
Kelli, I agree about the over-explanation thing. I used the "genetic immune deficiency" thing once since you suggested it, and it worked. Thanks!
zephaewryn
Sometimes I just say, "I can't make antibodies...so I infuse antibodies from plasma donors".
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