Article - The Autoimmune Connection

[hedgehog]

1. When I hear that 50 Million number, I get a little skeptical.

I think about half those people have diabetes. While it is an autoimmune disease, most people have heard of it, many even understand it, and failure to treat it properly has obvious and immediate symptoms. (Not to diss anyone dealing with diabetes - it's hell on wheels! I was relieved to find out that my thirst was from Sjogren's, not diabetes. )

Diabetes aside, I think we with autoimmune diseases fall into two classes - those with visible uncontrolled symptoms and those with invisible or seemingly trivial symptoms. If you have a swollen, red joint or patches of skin with no pigment, it's obvious to everyone that something is wrong.

If you have a digestive problem such as Crohn's or celiac disease, there may be a suspicion that somehow you are doing something to cause it. Given the number of people self-diagnosing with gluten intolerance, you may be perceived as making it up!

Then there are fibromyalgia and the rheumatoid/lupus axis - diseases such as lupus, RA, Sjogren's, MCTD, etc. You may or may not have positive results from a blood test or biopsy. Generally the disease is diagnosed if you are positive for two items from column A plus three from column B plus Symptom C. There may or may not be flares with periods of low disease activity in between. These diseases often have no visible symptoms but are also characterized by massive fatigue. Both the sufferer and everyone around are constantly asking if the fatigue is real or "in your head" or a plea for attention or mere laziness. I'd love to see a better understanding that often times, as bad as the pain can be, it's the fatigue that causes the real problem! As an example - when my daughter's RA flares, it's not her swollen joints that make her use a handicapped parking space, it's the fact that she can only walk so far before having to sit down and rest! I'd love to see a diagnostic test to measure fatigue. I'd love to see research into the mechanism to prove it's real.

Getting back to that 50 million number -for me the real question is whether there are people out there who don't know anyone with an autoimmune disease? If so, quoting numbers like that will only bring on skepticism, not concern. That helps no one.