Shine A Light: Lupus a Chronic Disease You Must Be Aware Of

Just married and carrying an unborn baby, Julia Whippy was diagnosed with  lupus, a life-threatening disease, in 2009.

Fear flooded Ms Whippy’s mind as she and her husband received the diagnostic result.

They had just married in December 2008, about to have their first child, and a year later she was diagnosed.

The doctor’s news shocked them. Lupus is a chronic autoimmune disease where the immune system attacks healthy tissue, causing inflammation and organ damage.

Ms Whippy was among the 50 per cent of people with lupus, majority being women, who had a severe form of the disease that affected their kidney, termed lupus nephritis – a potentially life-threatening complication.

She had always felt symptoms of lupus growing up. She would experience hair loss and continuous low haemoglobin count.

At four months pregnant, she went to the hospital for clinic also because her body started to swell.

Following her diagnosis, she was admitted and treated in hospital for a few months.

Lupus caused the couple to abort their baby because of the heavy medication and chemotherapy Ms Whippy had to undergo.

“It was difficult because it was something new,” she said.

To keep them informed and understand the disease, the couple researched and studied the topic.

This was the turning point for Ms Whippy.

She had to change her diet, replacing meat with vegetables and fish. She had to let go of certain fruits such as pawpaw and banana because they were high in potassium.

She recovered in 2010 and returned to work.

Because she was required to travel and conduct field work, her stress level increased and her lupus started to flare up.

She continued her medication and clinic.

But in 2015, her kidney had to be removed in India.

Under their medical insurance, she and her mother, as carer, travelled to India.

Initially, Ms Whippy was to undergo a biopsy, but upon the advice of the doctors in India, she agreed to a kidney transplant.

Her husband, who was back in Fiji, was phoned to donate his kidney.

The two were incompatible, but the doctors made it work.

Ms Whippy’s husband travelled to India and donated his kidney to his wife.

“You need to know your body. Present yourself early to the hospital if you are feeling the symptoms,” she said.

“Research about the disease and understand the problem. Lupus eats your system from the inside.

“Right now, I feel fine. With lupus, you can live a normal life. Just stay on your medication and correct your diet.”

Dr Vishal Kumar shows the theme of this year’s World Lupus Day.

RESEARCH

Fiji is among the countries with the highest number of lupus globally, suggesting a disproportionately high burden in Fiji and systematic issues that need to change.

The findings of a study on lupus titled “Incidence and treatment outcomes of lupus nephritis in Fiji”, nephrologist, Dr Vishal Kumar highlighted several concerning findings.

Firstly, the crude annual incidence of 2.44 per 100,000 per population places Fiji among the countries with the highest number of lupus globally.

Secondly, the median age of those diagnosed with the disease was 25.7 years, with many being adolescents and young adults.

Further findings indicate that 39 per cent of those with lupus had impaired kidney function at the time of diagnosis.

Dr Kumar said at two years, 48 per cent of patients had either died or progressed to end-stage kidney disease requiring dialysis “underscoring the urgent need for early diagnosis, consistent treatment, and long-term follow up”.

Chairman of the Board of Lupus Foundation of Fiji, Dr Mecuisela Tuicakau, advises people to be aware that lupus is common in skin of colour especially young females between the ages of 20 and 30s.

“Itaukei are more affected than indo-Fijians. Lupus can mimic other diseases, common symptoms – skin rash that is worse on sun exposure, weight loss, feeling unwell, joint pains, and hair loss.

LATE DIAGNOSIS

Dr Kumar said the high rate of two-year death or dialysis dependence (48 per cent) reflects both systemic and social determinants.

“Many patients presented late in the disease course due to low awareness of lupus at the primary care level and delays in specialist referral,” he said.

Tuicakau, said if diagnosis was done early, patients could live a normal lifespan following advice from doctor and attending regular clinics.

“...the concern is those presenting late for appropriate care,” he said.

SYSTEMIC BARRIERS 

Dr Kumar said achieving remission among the patients in his cohort was difficult because of overlapping medical and systematic barriers.

He said 76 per cent of patients had suboptimal adherence, often driven by health literacy gaps, medication costs, and inconsistent drug availability.

“At 18 per cent had severe renal impairment, and in 40 per cent of cases, lupus was the first manifestation of lupus.

“Some patients were critically ill upon arrival, limiting treatment options.”

LIVING WITH LUPUS 

In 2024, just before her annual exams, 14-year-old Arieta Toga noticed butterfly shaped rashes spread across her body.

The rashes started on her back and eventually appeared on her face.

She started feeling symptoms of joint pain, her lips and face started to swell up, and at one point her menstrual cycle stopped for three months.

Her weight started to deteriorate rapidly. Doctors were giving different explanations.

“I began to feel the pain and notice changes in my body between October and December, even to the extent of losing my hair. It was a different kind of pain, deep, strange, and hard to describe,” she said.

Ms Toga was affected emotionally, mentally and physically.

“My body changed with the symptoms, and as a 14-year-old girl, it was painful and frightening. I cried most nights because I was away from my parents. I live in Nakasi with my mother’s brother and sister, while my parents are from Cakova Village in Lau.

“Hiding the pain only made things worse. I suffered in silence, and by the time my condition was diagnosed in December, it had become serious. I ended up spending New Year’s Eve in a hospital bed at the Colonial War Memorial Hospital.”

Ms Toga said she began to feel frustrated and confused, blaming herself because not the doctors nor her family could give her clear diagnosis.

“Emotionally, I reached a very dark place. I began to hate myself and, at times, wished I could die to escape the pain.

“My knees were swollen, my hips constantly tired and aching. I kept telling myself I didn’t deserve this pain. I felt emotionally drained and completely exhausted.”

Guardian Ropate Robi said the uncertainty was the most challenging part for him.

“Life has completely changed. Raising a child with lupus has added a layer of emotional, financial, and physical demands that we never expected,” he said.

“Our daily routine now revolves around medical appointments, managing medications, watching for flare-ups, and making sure she gets proper nutrition and rest.”

Mr Robi advises parents to know the signs and get second opinion on the status of their children’s health if they are sick.

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