From dive trips to a transplant: One woman’s battle with a rare autoimmune liver disease

Unbearable itching, crushing fatigue and years on “standby” waiting for a liver transplant became this 43-year-old divemaster’s reality after she was diagnosed with primary biliary cholangitis – a rare autoimmune liver disease that strikes more women than men.

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As a divemaster, 43-year-old Quek Jon Jon was used to adventure and leading adrenaline-filled dive trips overseas every month. That all changed in 2017 when she was diagnosed with primary biliary cholangitis (PBC), an autoimmune liver disease in which the immune system attacks the microscopic bile duct cells in the liver.

Over time, this causes loss of bile ducts, jaundice, liver cirrhosis (scarring), liver failure, liver cancer and eventually death, said Dr Thinesh Lee Krishnamoorthy, senior consultant at the Department of Gastroenterology and Hepatology at Singapore General Hospital (SGH).

By 2023, Quek needed a liver transplant. The once ultra-fit diver lived each day waiting for the call that could save her life.

“By then I was already suffering physically and mentally from lots of symptoms,” she said in Mandarin. She struggled with relentless itching, extreme fatigue and jaundice that left her unable to function normally, and she had to stop working.

Global data shows that PBC affects around 18 out of every 100,000 people. Women have an increased risk of developing PBC, in addition to many other autoimmune diseases, said Dr Thinesh, who treated Quek. Eighty per cent of people who develop PBC are women.

What exactly triggers PBC is unclear, but it is thought to happen when certain environmental triggers set off the disease in people who are genetically predisposed to develop it, said Dr Thinesh.

Even though genes may play a role, research suggests that genetic factors only account for 15 per cent of why people develop the disease, he added.

Some studies have found links between PBC and possible environment triggers such as urinary tract infections, hormone replacement, nail polish and cigarette smoking. However, Dr Thinesh stressed that these are only possible associations and have not been proven to directly cause the disease.

A DIAGNOSIS THAT CAME OUT OF NOWHERE

Before her diagnosis, Quek had never heard of PBC. She had gone to a doctor for a persistent migraine, something she had been struggling with, when a blood test found abnormalities.

She was initially confused by the unexpected diagnosis, as she had always led an active lifestyle.

Although the mother of two had been experiencing fatigue, she thought it was due to stress or lack of sleep, like many women balancing work and family.

As the disease progressed, the fatigue worsened. “It’s a different type of tiredness. When you sit down, you’ll just keep dozing off, and that goes on for the whole day,” she said.

Quek also experienced persistent skin itching, and her skin and whites of eyes took on a yellowish tinge. She lost weight and her urine turned a dark, almost chocolate colour.

The itch, she recalled, was unbearable and she could not sleep or work properly.

“It was from head to toe, like millions of ants crawling on you. There’s no rash, and nothing you can do about it, so I just had to tolerate it,” she said.

According to Dr Thinesh, patients usually experience itch, lethargy, or non-specific right upper abdominal pain. Some patients may also complain of dry eyes and dry mouth, together with other symptoms.

“Although there are some treatments for itch (in PBC patients), approximately 40 per cent of patients do not respond to treatment. Severe, intractable (hard-to-control) itch is an indication for liver transplantation,” Dr Thinesh said.

However, with the increase in health screening, Dr Thinesh noted that more patients are being diagnosed before symptoms appear, through abnormal liver tests, specifically raised serum alkaline phosphatase.

“This combination of tests (also known as liver function tests) are often performed routinely as part of health screening packages. However, there are many causes of raised alkaline phosphatase, and this requires formal evaluation before one can ascribe a diagnosis of PBC,” he added.

LIVING ON STANDBY FOR A LIVER TRANSPLANT

Quek initially managed her condition with medication. But over time, her symptoms worsened and she was eventually placed on a liver transplantation waitlist.

Once constantly on the move, she was afraid to travel for long periods and always had her phone within reach. She described it as living on “24-hour standby”.

Her last dive trip, which she obtained her doctor’s approval to go on, was in 2024. Quek said her symptoms worsened after that and she had to stop diving.

Three times, she was told a liver might be available, only for each opportunity to fall through.

“Every day, you think about when you can have the operation, and, if you have the operation, will you die from it too? I was very down,” Quek said. “Sometimes, I felt like giving up but luckily, I met a doctor who never gives up on his patients.”

Her children, now aged 18 and 19, were her strength and the reason why she held on during the lowest moments of her health ordeal.

TREATMENT OPTIONS FOR PRIMARY BILIARY CHOLANGITIS

The first line of treatment is a medication called ursodeoxycholic acid (UDCA), a bile acid. Dr Thinesh explained that UDCA does not cure the disease but can be effective in 60 to 80 per cent of patients, slowing the disease down to the point of minimal progression.

For those who do not respond to UDCA, other options can be used. Newer treatments such as seladelpar and elafibranor have shown response rates of about 50 to 60 per cent in patients who did not adequately respond to UDCA or failed the treatment, Dr Thinesh said.

“Both drugs have also demonstrated improvements in itch symptom scores, which is a major step forward in treating the disease,” he said.

Elafibranor was registered in Singapore in September 2025 while seladelpar is not yet available in Singapore.

A liver transplantation is usually recommended for patients where the disease has advanced despite treatment.

Dr Thinesh said PBC patients usually do well following liver transplantation: The one-year survival rate after liver transplantation is about 90 per cent and the five-year survival rate is around 60 to 70 per cent, though PBC can recur in some patients.

“Patients should be able to go back to normal functioning and the itch resolves although fatigue can persist. By one year, most patients are living near normal lives and need to take just one to two medications to prevent organ rejection,” he said.

ANOTHER CHANCE AT LIFE

Quek received her liver transplant in September 2025. On the day she received the call from the transplant team, Quek said she rushed down to SGH within an hour. The surgery was successful, and her recovery was relatively smooth sailing.

Seven months on, she feels well but remains cautious. She avoids going to crowded places and engaging in strenuous activity to reduce the risk of an infection while being on lifelong immunosuppressive medications to avoid organ rejection. Quek intends to return to diving after her health stabilises.

Having been so sick in the past few years, Quek said it feels like she has been “reborn”.

“I don’t want to waste this chance. If I get any infection or liver rejection, I will have to suffer all over again,” she said.

Quek urges women to listen to their body. “As women, we are capable of many things, but we must also take care of ourselves. Without good health, there’s no need to talk about anything else. We only live once,” she said.

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