I personally have been the benefactor of a MR elastography screening which truly changed my own life, and quite literally may have saved my life. With my dreams to cruise the oceans with my husband aboard our sailboat, a routine screen with MRE showed that I had developed cirrhosis despite being diagnosed with very early stage PBC only 7 years prior. This is extremely rare in the PBC disease progression and especially so when a patient responds to treatment as I did. Had I not been given an MRE test, I may well have launched for months long journeys across the pacific and suffered a catastrophic complication simply because no one suspected I had developed cirrhosis and could be facing liver failure decades sooner than ever imagined. I know I am not the only one who has benefitted from this advanced imaging technique. I am simply one patient of thousands who has been or will be touched by this new imaging era and as such, am ever thankful for the collaboration between research, technology, health care and patients.
This is why I am so passionate about sharing the news about MRE and Radiology's ability to detect liver disease progression. I'm not unique, nor original, just a patient that is appreciative of what Resoundant does for those of us with liver disease and the future implications for possibilities in the future.
In 2007, the founder of PBCAdvocate.org Cathy Mumford, was diagnosed with what was then known as Primary Biliary Cirrhosis. She immediately became a passionate patient advocate as she learned everything she could about this rare chronic autoimmune liver disease.
Cathy has spoken at events, participated in advocacy days with US Representatives and Senators to seek funding for PBC research, supported individuals both newly diagnosed and "old timers" and continues to be a voice for patients.
As a member of the American Liver Foundation's National Patient Advisory Committee (NPAC) for PBC Cathy continues her advocacy through this well respected organization. Cathy is also a member of the largest support group for PBC patients in the US, PBCers Organization. She focuses on advocacy, conferences, and research and serves on the Executive Committee.
Primary Biliary Cholangitis (formerly known as Primary Biliary Cirrhosis) or PBC, is a rare autoimmune disease. There are over 7,000 rare diseases and over 100 liver diseases. With the majority of attention in the liver community focused on Hepatitis B and C, PBC is often over looked by researchers, as well as pharmaceutical companies because it is a small population of patients. Government research funds are rarely allocated to PBC and advocacy allows our voice to be heard among all the din of fund seeking for research of disease. While it is still a strong impact on health, particularly for women (90% of PBC patients are female), this issue is overlooked on the Women's Health front as well. With effective advocacy, the awareness of PBC is rising and research is looking into more options for treatment and eventually a cure.