When Brandi B., the director of a non-profit organization for violent and sexual crime victims, was in her early 30s, she began experiencing unusually high levels of stress and fatigue. She initially chalked these things up to her demanding job, but after developing shingles and noticing significant hair loss (issues that aren’t usually related to PBC), she decided to make an appointment with her doctor.
Brandi always knew that her grandmother had the rare, autoimmune liver disease PBC, but was still surprised when her liver blood test revealed high enzyme levels known as ALP (alkaline phosphatase), a marker for PBC. As an otherwise healthy person who did not abuse drugs or alcohol – she didn’t understand how this could be happening to her. While PBC is not related to alcohol consumption, it does have a genetic component – a fact that likely increased her risk. Despite her elevated test results and family history, being only 32 at the time, her doctor initially ruled out the possibility of PBC. But with further testing and evaluation, Brandi was ultimately diagnosed with PBC at age 34 – far younger than the norm.
Pay attention to your liver. In the same way that most people know their blood pressure and cholesterol numbers, I wish that everyone knew their liver numbers.
Initially devastated, and concerned about the potential social stigma of having a liver disease, Brandi leaned on her loving husband, family and close friends for support. Sadly, Brandi’s grandmother- her biggest cheerleader- died shortly before Brandi was diagnosed, and Brandi regrets not being able to talk to her about the disease they shared. But now, Brandi says she feels optimistic about her future, and welcomes the opportunity to help educate women who may not be prioritizing their liver health, by encouraging them to have regular liver blood screenings. These routine tests are often how many people are diagnosed with PBC, since not everyone experiences symptoms until the disease has advanced.
Today, Brandi takes medication to manage her PBC and focuses on living a positive and healthy lifestyle, with her husband, dog and cat by her side. She eats a clean diet and enjoys outdoor activities like camping, swimming and canoeing. She also takes tremendous pride in maintaining the home that she and her husband built themselves from the ground up, including everything from clearing the land and laying the foundation, to insulating, carpeting and painting every wall.
If Brandi could give one piece of advice to other women, she says, “Pay attention to your liver. In the same way that most people know their blood pressure and cholesterol numbers, I wish that everyone knew their liver numbers. Ask your doctor for a liver test – you owe it to yourself and those you love, to know what’s going on inside your body.”
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