Article - The Autoimmune Connection

[Lisa0825]

I was diagnosed with Autoimmune Hepatitis earlier this year. Responding well to treatment. I saw this article today and shared it on FB and by email since so many people do not understand autoimmune diseases. I have even been asked by health professionals if I am contagious. I don't have a virus. I have a body that is attacking itself!

The Autoimmune Connection

For an estimated 50 million Americans, there's a war going on inside the body. As far as wars go, this one is senseless—even downright insane. Picture this: Suddenly, without warning, the Navy SEAL defense corps that is the human immune system goes on a metabolic rampage. White blood cells, like millions of tiny soldiers gone haywire, begin to infiltrate a chosen area—whether it's the pancreas or liver, gastrointestinal tract or brain. Yet instead of going after a foreign intruder such as harmful bacteria, they are assaulting healthy, innocent body tissue. It's as if these cells have collective amnesia and have forgotten the difference between "self" and "nonself." The result is an insidious inflammatory response, a sickness where none existed before and where none ought to exist—and a disease that is often as hard to treat as it is to understand.

This is not the Twilight Zone. It's autoimmune disease, and it's very real—even more ubiquitous in our culture than cancer. Yet despite its prevalence, many people don't really know what an autoimmune disease is; though researchers have identified some 80 to 100 of these disorders, 85 percent of Americans can't name even one of them. Individually, many of these illnesses are well known—such as multiple sclerosis (in which the body attacks the central nervous system); type 1 diabetes (target: the pancreas); and ulcerative colitis, Crohn's disease, and celiac (the GI tract). Others are lesser known, like vitiligo, a form of autoimmunity resulting in loss of skin pigmentation (Michael Jackson had it). A few, like lupus and rheumatoid arthritis, are systemic—meaning the self-attack crosses organ lines and affects many areas throughout the body. In addition to their autoimmune nature, there's one more thing that these widely disparate illnesses all have in common: They're on the rise.

More at the link above...

[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.

[Lisa0825]

2. Well, since my diagnosis this year I have found out that I personally know

no fewer than 12 people with various diseases... 3 with lupus, 2 with crohn's, 2 with Sjrogen's, and I can't recall at the moment what the others have. So the number wouldn't surprise me at all. Before I was diagnosed, I was aware of 2 of those. The others started sharing their information with me when they found out I was ill.

My symptoms are under control with medication now, but I was in extreme pain before I got on prednisone. After just a couple weeks in pain, I started to wonder how long I could live and/or take care of myself if they couldn't find out what was wrong with me. Getting dressed, turning doorknobs, starting my car, etc, were all excruciatingly painful. Now I am getting weaned off of prednisone and every time I get a twinge, it makes me fear the pain returning. Plus, secretly, it was damaging my liver, and had I not been diagnosed in time, I could have had liver failure and needed a transplant. My brother has been hospitalized twice for lupus, and my friends with Crohn's are doing well now, but also went through very serious debilitating periods of time. None of us looks sick now, so unless we shared our condition with someone, they would not know. Plus, many people might know someone with an AI disease but not know that it is AI, and if it is a relative, they need to know that because it makes it more likely that they may develop one as well.

I think AI needs a lot more publicity. Just like cancer is a bunch of different diseases related by certain criteria, AI is as well, so more awareness will lead to funding more research. The treatment for AIH hasn't changed much in 27 years. There are some exciting new studies going on, but they are not as well funded as more well known diseases.

Plus, if AI is increasing in the general population, it's something that is going to become bigger drain on the health system, so it does need more attention and more money.

[hedgehog]

3. You bring up several good points - the key point is that we have to get a handle on

what's happening. I have three daughters with AI diseases, but it never occurred to me that I had one also. My GP investigated and then treated each symptom as it arose. In other words - for 20 years ( )I was being properly treated for my AI without knowing that that was the source of all my problems. When he sent me to the Rheumatologist, I thought he was being overly cautious!

I've been dubious about the effort to develop a test to identify Sjogren's - your comments made me see that getting a clear, early diagnosis is a step in identifying the extent of the problem.