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.

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Allergies & Immunity
/ Common Variable Immunodeficiency Support Group

MEDICAL ALERT BRACELETS

stimpy
stimpy
Does everybody know you are SUPPOSED to be wearing MEDICAL ALERT BRACELETS that states your disease? Its the first thing my IMMUNOLOGIST had me do when she diagnosed me. Should you ever have to go to the ER in an unconsious state, you need one. It also makes the doctors take things more seriously.
deleted_user
deleted_user
This is freaking me out now. I have never been told by any dr. or anyone for that matter, that transfusions could be so dangerous. This sounds troubling. Can anybody find any info on this on the Internet?

I am convinced on the bracelet.. certainly can't hurt. What is the most important info to squeeze on? Obviously, my name. Is it necessary to put the full name 'common variable immune'.. or will CVID work? Any ideas you can throw me. Thanks friends.
stimpy
stimpy
Fezzy - I dont wear mine anymore, they are kinda a pain in the arse. And actually I don't EVEN KNOW WHY we are supposed to. The only thing I can tell you is when my doctor formally diagnosed me she told me to wear an medical alert bracelet. I just had the whole thing spelled out common variable immunodeficency. I have zero Iga's, and from reading what other people say on this site, I guess its dangerous to get a transfusion if you have no Iga antibody. But I will tell you I was in the ER and my lips turned blue and I passed out (then they FINALLY TOOK ME SERIOUSLY) and it turned out I had sepsis, my husband was with me and he was able to tell them about the CVIDS, but if they had had to do some emergency anything having to do with a transfusion, then I guess it would be good for them to know. I mean there probably is a 1 in million chance, but you never know.
deleted_user
deleted_user
Thank you Stimpy. That makes sense. In my case there have been many times when I end up in the ER alone, so the info would just be one more piece of the puzzle. I have an infusion this week, I'll ask my immunologist this week and see what he says too.
stimpy
stimpy
Yes, good idea. Maybe he/she can tell you the REAL reason we should be wearing them. And especially for you. You cant be too safe.