Kim Suphorn was a healthy young woman before she fell sick with mysterious symptoms a year and a half ago. She was diagnosed with lupus – a disease seen regularly by doctors in Cambodia, who say there is a severe research gap. Rosa Ellen reports

Kim Suphorn first came down with her mysterious symptoms a year and a half ago. She was 24 and working at a green technology company as an admin assistant when her wrists flared up in rheumatic pain. Smart, petite, a keen reader who worked hard and was a little on the quiet side, Suphorn lived closely with her sister and parents in a narrow two-room flat in the peeling White Building, the once visionary 1960s social housing project in Tonle Bassac that has since fallen into slum-like disrepair.

Following the wrist pain, says Suphorn’s sister, her fingers swelled up and her soft skin became dry. She lost her appetite and would seemingly forget to drink all day. One day she came home from work and fell asleep in the dark corridor outside the flat, unable to resist her sleepiness even to unlock the door.

Not long after, all her ailments seemed to manifest in blotchy red spots over her body. She felt too wretched to go to work.

“We didn’t know what was wrong. She stopped working for one or two days and then her manager came by the house and saw she was shaking, and he took her to [Calmette] hospital and the doctor diagnosed lupus,” says her 28-year-old sister Socheata.

It is the angry red spots that are thought to give lupus erythematosus – lupus is ‘wolf’ in Latin – its name. In the Middle Ages the cutaneous hallmarks of the mystery disease looked like animal bites. The rash can also flare up in a large butterfly shape on the face, but the other symptoms are systemic and notoriously varied (joint pain, light sensitivity, kidney inflammation, heart problems) and elude diagnosis – for this reason it’s known as ‘the great pretender’.

A year and a half after Suphorn’s diagnosis, Socheata and her father Kim Ny, sit on the bed where Suphorn lies sleeping, now bedridden and still covered in the lesions.

She is confined to a red-blanketed bed that takes prime place in the poor but scrupulously tidy flat. Her eyes light up for visitors, but she gets addled easily and can’t hold a conversation. Socheata says she “is like a three-year-old” and has to be coaxed daily to eat the special bland soup and meat and vegetables her mother makes for her.

At Calmette hospital, the family had the bare facts of lupus explained to them, but they are anxious to understand more about the disease that has thrown their lives into chaos. They are not the only ones.

What is understood about lupus is that it is an auto-immune disease and chronic – but not contagious. Unlike other auto-immune diseases, where the immune system doesn’t work properly, a lupus sufferer’s immune system is in overdrive, producing, instead of normal antibodies, ‘auto-antibodies’ that attack healthy tissue and make the body vulnerable to a host of other disease and viruses. Five million people around the world are thought to have the condition but , in first world countries where it has been studied, the number was noticed to be considerably higher in Asian and non-Caucasian people. Women are far more likely to get it than men.

In Cambodia there is no local data on the disease and the World Health Organization, even at the regional office level, has no one working on systemic lupus erythematosus (SLE – the most common and severe form of lupus). Despite this, two specialist doctors at say they see at least one new case a day of the severe form of the uncommon disease, and would love the resources to conduct research on lupus on Cambodia.

Professor Mey Sithach was working in a dermatology department in Phnom Penh in the late nineties when he started to notice how many patients were presenting with lupus-like spots and rashes.

The young doctor had only recently returned from five years of medical training in Germany and was unusually primed for recognising the condition, having completed a Phd in dermatology, with a special interest in auto-immune diseases.

He says he sees “two to three” new lupus sufferers a day: predominantly women, and mostly from the provinces. The sunlight is the most obvious trigger for them, he says. Sunlight causes skin irritation and serious internal problems start from there.

“I started my work in 1997, and the prevalence was already high. I don’t know if it is because they knew that I treated these patients or just the prevalence of the disease is already high,” he says from his private practice in Khan 7 Makara on the second day of the large CNRP rally in Freedom Park. The 42-year-old doctor is taking advantage of the lull to spend the day away from his lupus clinic at the public Preah Kossamak hospital.

Since becoming head of the dermatology unit at Kossamak, Professor Mey’s clinic has become the country’s default centre for people with ESL. Because the disease presents as rheumatic – like it did for Suphorn and her sore joints – or even neurological – as hallucinations and memory loss – sufferers come through a variety of hospital departments. Others get lost in the system. The ones who find their way to Mey are lucky in that he has seen almost every obscure and seemingly negligible symptom: hair loss and urination problems, to puzzling, quadriplegia-like paralysis.

“To be an expert in these auto-immune diseases you have to stay at least one to two years in the auto-immune diseases department, and you have to read every day and you have to work every day with patients. It needs a lot of experience,” he says.

At Kossamak other doctors know to refer patients with suspected lupus to Mey, but across the public hospital system there isn’t the same communication.

“Calmette is more public-private, but Kossamak is really for the poor. Most of the poor patients come to Kossamak because it costs less money . . . [for a] consultation, the dermatology department is the highest, at 12,000 riel but the other departments maybe cost 10,000 to 8,000.”

When Suphorn was taken to Calmette, her kidneys were already suffering serious problems. She was told to stay at the crowded hospital ward for two weeks.

“That cost me one month’s salary” says her father, Kim Ny. By the end of her stay he’d lost his job as a driver for taking too much time off and was left with a $5000 debt from her hospital stay. He became a tuk-tuk driver and the family, who all worked full-time, went into overdrive to pay the debt and fund Suphorn’s medical bills.

Lupus never goes away but it can be treated and the vast majority of people live with it under control, which can be achieved in less than two months on the right medication

The Kim family could only afford for Suphorn to see a doctor when the lupus flared up to a point where she needed to be hospitalised.

“[The doctor] said it was a disease about the body and when a patient has it she starts to lose her memory, and she has sore joints and red spots on her body. Suphorn couldn’t talk well and [she] lost her hair,” Socheata says. The second time she flared up again so badly she had to return to hospital, the 25-year-old needed three bags of blood. The family wasn’t eligible to donate, so Socheata’s friend and a nurse at the hospital stepped in to help.

The most pressing problem, Mey says, is the cost of treatment – it’s what makes the disease different for lupus sufferers in Cambodia and those in first world countries.

“This is the very big question that I want to study. Lupus patients spend at least $40-50 a month.”

One cost that is out of the reach of most patients is a notionally simple one: a $12 anti-nuclear antibody (ANA) blood test that shows the most accurate reading of antibodies can only be done in Vietnam and Thailand, where the laboratories have the facilities. This is necessary for up to 20 per cent of patients, Mey says.

“We know when we can start [treatment] but we don’t know when we can stop it – until remission of clinical findings. That’s why we say in Cambodia we have difficulties with the blood test, because when you have the possibility to do an ANA [you can tell if the antibodies] go down or gets normal . . . If they have no symptoms maybe we can reduce the dosage of the hydroxychloroquine – or if half a year passes and there’s no sign of any skin problems, we can stop the hydroxychloroquine”

As well as being an effective treatment for lupus, the drug hydroxychloroquine is also an anti-malarial – a happy synchronism for those who live in the provinces, where malaria drugs are in supply.

As the majority of rural patients have got to a severe point with the disease before making the trip to the city to seek treatment, another part of Mey’s job is to make sure the patients return for their treatment.

“We persuade them – urge them – to come to us, not because they want to get the medication but because we want to control the skin lesions. Somebody who lives nearby you can give an appointment every month but somebody who lives far away like Banteay Meanchey, you can give an appointment of six weeks, but already it is hard to bring them back to your department. But they are very compliant patients. The fact is that most of these patients are poor because they’ve been sick for a long time before they come for treatment – but when they come and get the correct diagnosis and the correct treatment they get better very fast and they lose their attention.”

Dr Ly Cheata, who works at the Khmer-Soviet Friendship hospital in the general medicine department, says after five years of treatment, 95 per cent of lupus patients will survive, while others will succumb to heart, kidney or lung disease, being so susceptible to infection. From the large ward B, he estimates he sees at least one new patient a day with SLE, the majority are women aged in their late twenties, of child-bearing age.

“I feel pity and sorrow for them, especially as their looks [deteriorate] – their hair falls out, they have lesions. Also [they get] neurological problems, sometimes they have hallucinations, and they can’t work.

“We need more study or research but there aren’t any people studying this yet because there’s not the money – it should, but it’s not happening.”

Dr Cheata is in touch with Professor Mey, and refers patients to him. He’s doesn’t think there is an unusually high percentage of cases among Cambodians, citing high lupus figures in France’s population as well, but notes that the statistics are so lacking it’s hard to tell.

Across the developed world, lupus networks – including the prominent US Lupus Foundation – offer support and fundraising for a medical answer to the perplexing disease.

In Singapore, a sufferers’ association exists and there is at least one lupus unit at one of Thailand’s major research universities.

At the Kims’ home, Suphorn, who is cared for in shifts by the family, lies sleeping in the dim mid-morning light of the flat. The family will take her to Kossamak in a few days for the first time, after finding out about Mey’s clinic.

Two years apart in age, it’s hard for Socheata to see her sister so frighteningly frail. Suphorn repeats herself, and gets upset, sometimes telling them she doesn’t want to live.

“We are suffering with her, but she won’t eat,” Ny says, scolding her.

“I must give love to her. She says, ‘Dad, I can’t eat.’ Yes [I scold her] – but if I didn’t, she wouldn’t eat at all.”