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On this week’s show Joyce and Mike welcome Ricky Safer (CEO) and Joanne Grieme (Board Chair) from PSC Partners Seeking a Cure, a non-profit dedicated to finding a cure for Primary Sclerosing Cholangitis. PSC is a chronic liver disease where the bile ducts become impaired, eventually leading to deterioration of the liver. It is commonly associated with inflammatory bowel disease and ulcerative colitis.
We will discuss the difficulties patients often encounter in getting an accurate diagnosis of this condition. Until it is properly diagnosed, it is not possible to set out a reasonable treatment plan.
People with PSC often need a liver transplant. One young man has had three liver transplants and is doing well. We talk about liver transplants.
As with so many rare diseases, the patient becomes responsible for navigating the medical system, arbitrating among the advice of many specialists, and keeping track of appointments and records. Ricky and Joanne share what they have learned about dealing with the complexity of gastrointestinal complaints.
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