Wednesday, February 24, 2010

Cool Resource For Those With Immunodeficiencies

While browsing on MedHelp, a site where patients advise and support other patients, I found a reference to Immune Deficiency Foundation, an organization I hadn't come across before.

It's got a lot of good information on it on a variety of immunodeficiencies. I even found the best resource I've come across yet on IgA deficiency, which is something I have. I plan on printing it out and taking it to several of my doctors. I found it especially interesting that IgA deficiency is associated with autoimmune diseases like lupus, but also with a variety of gastrointestinal problems.

Makes me wonder if maybe my IgA deficiency will eventually help pull together a name for my mystery illness.


SharonMV said...

IDF is a great resource. As you know, I have a primary immune deficiency (CVID) as well as Lupus. GI issues are often a problem for those of us with IG deficiencies. I didn't realize that all my GI problems were due in great part to being immune deficient - just thought it was from having to take NSAIDS.. Were you ever able to complete your pneumovax vaccine test? Sometimes people have normal IGG and have only specific antibody deficiencies. And some with IGA deficiency alone are symptomatic.


Aviva said...

Hey Sharon!

I totally thought of you when I found myself browsing IDF! I did do that pneumonia vax ... wow, I think it was late Dec. 2008. I then had the follow up IgG testing last spring or early summer, and it showed that my various IgG levels responded appropriately. My immunologist says we're going to repeat those tests later this spring to see if I have a problem retaining my antibodies, because I'd already had a pneumo vax that apparently didn't take (as well as causing me that allergic reax) as well as chickenpox vax that didn't take. Weird!

Were you an adult when you discovered you had CVID? Or did you know it when you were a kid?

The relationship between immunodeficiencies and GI problems was interesting to me. I've had GI problems to some degree pretty much my whole life, but they got severe 10 years ago when I had a ginormous peptic ulcer, which we've always blamed on NSAIDs because other types of NSAIDs kept causing new ulcers. I was also surprised when my GI doc said Lupus can cause GI problems. We'll see if my endoscopy and colonoscopy next week shed any new light on my bizarre health problems!

SharonMV said...

I was not dxed til 2006, but have been sick with both Lupus and immune deficiency for over 20 years (as in too disabled to work). And when I first saw the immunologist he asked a great deal about my childhood. I am pretty sure I had the immune problems since early childhood, but not as severe, plus other parts of my immune system compensated. i had my first full blown Lupus flare (should have been according to my current rheumatologist) in my early 20s & also a period of contant infections. That lasted about 3 years. Then I had a remission I guess for a few years & went to grad school. Some of my good years, I had 6-7 sinus infections per year. Then I started having very frequent respiratory infections & fevers. Finished my PhD exams got worse, joint & other lupus symptoms started, had episodes of fainting, daily fevers, got pneumonia, hospitalized, lots of tests, no answers. And that takes you up to 1991. Sorry, to be so long but as you can see, my story is a long one. Oh, and I forgot - had an ulcer.

I'm glad your IGA deficiency is being watched and it's good that your other antibodies are going to be tested again.

Lupus can cause problems just about anywhere!