The story of Barbara
For several months when I would go for routine blood work all would be normal except for a few liver function tests — When additional testing showed some sort of liver damage, my internist sent me to a GI specialist. Additional blood work, ultrasounds, CT scans, etc all proved to be normal, yet my lab values continued to remain high. Last November the GI specialist said that I most likely had Primary Sclerosing Cholangitis which was verified by an MRI. Of course I never heard of it and neither did anyone else I knew (except my promary care doctor). In a nutshell, the biliary tree can get inflamed which can cause scar tissue which can eventually lead to needing a liver transplant. At this point I thankfully have no symptoms and my last round of blood work was actually normal – but that sword of Damocles is still there. Statistically I am not a young adult male, I do not have any other digestive problems, there is no family history —- I am not the typical candidate for this rare disease — chances of someone my age getting it are infinitesimal — but I got it. Thankful I found wonderful support group – PSC Partners Seeking a Cure — but there is so little that we know — about this and so many other rare diseases. I used to donate blood regularly — but because so little is known they could not take a chance and I can no longer donate. Hopefully there will be more research — again this is not a “lottery” I wanted to win — nor would I want anyone else to.