Is there anyone out there that has this? What has been your experience with it? My 26 year old granddaughter has it ans has for nearly 3 years now. It started right after she had a bout with liver inflammation and they removed her gall bladder. I noticed the first round red area on her hip 3 days after her surgery. I thought at first that it might be a bed sore and the hospital staff had left her on her side too long. It took over a year to finally figure out what the problem was and then it was me not her DR’s who discovered what was going on. How do you deal with the pain and other symptoms of it?