When Karen Rodway began experiencing persistent fatigue at 38, there seemed to be an obvious explanation.

The mother of four was working part-time as a nurse on an acute stroke ward at a major Melbourne public hospital, while her children attended three different schools and her youngest was just five years old.

“My life at 38 was busy, but I considered myself to be healthy and fit,” Karen said.

“I was conscious of a background fatigue, but because it was a busy period of my life, it seemed there was an obvious explanation given the demands of part-time work and family.”

Karen mentioned the fatigue to her GP during an appointment for an unrelated matter. Although it was initially attributed to her busy lifestyle, her doctor ordered comprehensive blood tests because Karen was approaching 40 and had a family history of bowel cancer.

When the results revealed abnormal liver function, her GP contacted her immediately. After establishing that Karen did not drink alcohol, take drugs or have a recent illness that could explain the results, she ordered a specific blood test for Primary Biliary Cholangitis (PBC).

Karen was diagnosed with the rare autoimmune liver disease, despite having never heard of it during her nursing career.

“As a nurse, I was shocked because I had never heard of the disease, but more importantly, as a parent I was worried about managing this condition while raising my children,” she said.

“Unlike now, there were very few resources, information or support groups available.

“However, as a naturally optimistic person, I made it my life’s goal to see my youngest child turn 18.”

PBC is a chronic condition in which the immune system mistakenly attacks the small bile ducts inside the liver, causing them to become inflamed and eventually blocked. Bile can then accumulate in the liver and cause progressive damage.

Around 5,000 Australians are estimated to have PBC, with women accounting for approximately 95 per cent of those living with the condition.

Hepatologist and Chair of the Liver Foundation’s Clinical and Scientific Committee Professor Simone Strasser said PBC often develops during midlife, when symptoms such as fatigue can easily be attributed to other causes.

“Some symptoms associated with PBC, particularly persistent fatigue and itching, can be nonspecific and may have many possible causes,” Professor Strasser said.
“Symptoms vary between individuals, and their presence does not mean that someone has PBC. However, as this time of life is also the most common time for PBC to develop, symptoms related to PBC may not be recognised by patients, or by their healthcare providers immediately.”

For Karen, PBC-related fatigue felt markedly different from ordinary tiredness.

“It is a full-body experience, and I describe it like trying to walk through water with weights attached to your legs or dragging yourself through mud,” she said.
“The desire, which I resist, to lie down is very strong at times. I am particularly affected in the mornings, and that has been the case for a long time.”

Professor Strasser said this fatigue can be intense and pervasive, affecting concentration, wellbeing and even a person’s motivation to complete ordinary activities.
“Muscles can feel heavy and tired, contributing to the feeling that everything is just too much effort,” she said.

“These symptoms can have a profound impact on people’s quality of life, their ability to work or do usual daily activities, and can encroach on enjoyment of social and family interactions.”

For approximately seven years after her diagnosis, Karen continued working and living much as she had before. Over time, however, the fatigue intensified and she developed muscle aches, dry eyes and a dry mouth.

By 2011, her health had deteriorated significantly. Her husband sometimes drove her to work and collected her after finishing his own day, while Karen would collapse onto her bed for 20 minutes after each shift before finding the energy to prepare dinner and spend time with her children.

“I tried to hide how dreadful I felt from them,” she said.

By then, Karen had developed cirrhosis, and the possibility of needing a liver transplant was hanging over her. She later joined a clinical trial that stabilised her condition and, according to her doctor, ultimately saved her liver from failing.

In 2014, her doctor told her she was “really sick” and should stop working. Although leaving the nursing career she loved was difficult, Karen also felt relieved that someone could see how unwell she had become.

“It confirmed that a medical professional could see I was very unwell and I was not imagining or exaggerating how I felt,” she said.

Karen later returned to nursing in research and community roles before retiring a couple of years ago.

Now 61, she has lived with PBC for almost 23 years. Her youngest child is 27, and Karen is a grandmother to four young children.

“When I turned 60 last year, I finally recognised that I can’t do all the things I once did, at least not at the same time,” she said.

“Having retired from nursing, I can invest my energy in the things I love – my family and friends and helping raise the next generation.”

Karen has also returned to studying literature and continues to enjoy ocean swimming, walking, using an exercise bike, listening to classical music and cooking.
She undergoes blood tests every three to six months and regular appointments with her specialist. Because she has cirrhosis, she also has liver imaging every six months, along with bone-health scans and gastroscopies to check for complications.

While fatigue does not necessarily indicate PBC, Professor Strasser said persistent or unexplained changes should be discussed with a doctor. Other possible symptoms of PBC include itching and dry eyes and mouth, although some people experience no symptoms before diagnosis.

“Greater awareness is not about encouraging people to self-diagnose,” she said.

“If someone is concerned about persistent or unexplained fatigue, or another unexplained change in their health, they should speak with their doctor.”

Karen echoed that advice, particularly when blood tests reveal abnormal liver function.

“PBC was a very lonely disease for me for a long time, but with the advocacy of the Liver Foundation, the spotlight has been turned on this rare disease,” she said.
“I strongly encourage others to advocate for their own health and to pursue further investigation if they are concerned. Trust your instincts.”

More information about PBC and liver health is available at www.liver.org.au.

Professor Simone Strasser received editorial support from Palin Communications, which is contracted by Ipsen to implement this PBC disease-awareness campaign. Professor Strasser was not paid for her participation.

IMPORTANT LEGAL INFO This article is of a general nature and FYI only, because it doesn’t take into account your personal health requirements or existing medical conditions. That means it’s not personalised health advice and shouldn’t be relied upon as if it is. Before making a health-related decision, you should work out if the info is appropriate for your situation and get professional medical advice.