My name is Brenda. In April 2021, I received a life-changing diagnosis of Primary Biliary Cholangitis (PBC), which I attribute to divine intervention.
The journey began in January 2021, when my sister Debbie passed away, leaving me with overwhelming anxiety. This prompted me to seek medical attention from my primary care physician (PCP). During our appointment, my PCP observed my visible bruises and inquired about my overall health. Her questions caught me off guard, but I shared my truth – I bruise easily and experience persistent itchiness. When asked about fatigue, I laughed, thinking it was just a side effect of motherhood.
My PCP created a plan to manage my anxiety and ordered blood work to investigate my symptoms further. Although I didn’t prioritize the lab order initially, a peculiar incident during a family vacation in March 2021 changed everything. My entire left foot turned into a massive bruise without any apparent cause. I felt my sister’s presence, urging me to take action.
The blood work revealed elevated liver enzymes and AMA positivity, leading my PCP to refer me to a gastroenterologist (GI). The GI diagnosed me with PBC, and my journey took a complex turn. I didn’t respond to the standard treatment, Ursodeoxycholic acid (Urso), which led to a new medication, Ocaliva. However, I didn’t respond to Ocaliva either, prompting my GI to refer me to a hepatologist.
Currently, I’m under the care of a hepatologist, and we’re exploring a new treatment option, Iqaro. As I approach my six-month blood work, I’m filled with hope and determination.
Primary Biliary Cholangitis (PBC) desperately needs more research, awareness, and understanding. Many patients, like myself, don’t respond to existing treatments, and it’s essential we expand our knowledge. When I share my story, I’m met with a lack of understanding, even from medical professionals. It’s time we shed light on PBC and advocate for better care and support. I’m committed to sharing my journey, inspiring others, and fueling the quest for a cure.
About the Author:
My name is Brenda Remo. I am 49 years old. I live in Arizona with my husband Mario. We have two kids and 3 grandkids. I am an huge animal lover and the beach is my happy place. I was diagnosed with PBC in 2021. I advocate for awareness of PBC. With awareness will come better care. We deserve better care.
