Clinical Trials & Studies Many patients of PBC hear about clinical trials for new therapies and wonder, what is in it for me? Can I participate? What do I have to do to qualify? Which is the best fit for me? There are some very stringent rules and regulations that govern participation in a … More Clinical Trials – Patients Have Power
I recently read an interesting commentary written by two physicians, both of whom are dealing with autoimmune disease in their own bodies. The journey of each autoimmune (AI) disease patient is different and because the risk of having multiple AI diseases or disorders is higher if you have one, this is particularly relevant to the … More What Doctors Have Learned By Having Auto-Immune Illness Themselves
We had two successful local meetings for members of the PBC patient community in January. Our first meeting was held January 27, 2018 at the UC Davis campus and was a combined meeting of PBC and PSC patients. Because there are many similarities between Primary Biliary Cholangitis and Primary Sclerosing Cholangitis (besides the obvious similarity … More Local California meeting update
I was recently honored by Resoundant, the makers of Magnetic Resonance Elastography (MRE) equipment that provides a non-invasive image liver by them sharing my personal story. MRE is a preferred technology for imaging of the liver¹ due to its detail and ability to accurately assess liver fibrosis in liver disease patients. Having undergone a MRE … More MRE & Me
California Meetings News As a PBC advocate as well as a patient, I am constantly striving to provide information, and inspiration to patients with this chronic liver disease. Living with PBC is not always easy and things can change as far as symptom severity on a day to day basis. For me, I suffer with … More Announcing local California meetings
I had the privilege of attending AASLD’s 2017 Liver Meeting® which is the largest conference for liver specialists in the US. I attended this conference as a member of PBCers Organization (the largest US based support group) as an exhibitor, along with several others from this organization. It was a fruitful event as we were … More What I learned from the 2017 Liver Meeting® in Washington D.C.
Changes at OPTN – Enhancing Liver Distribution You may be aware that OPTN (Organ Procurement and Transplantation Network or UNOS) is proposing a change to the way it distributes livers to those awaiting a transplant. Essentially the program has become a boondoggle of bureaucracy and dysfunction. For the past five years various groups, committees and stakeholders … More