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.
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