More research needed for better Lupus treatment

The majority of people who have Lupus receive treatment only once they have entered the advanced stages of the disease, which affects mostly women of reproductive age, experts says.

Rachmat Gunadi Wachjudi, an internist from the rheumatology division at Hasan Sadikin Hospital in Bandung, West Java, said on Thursday that the absence of advance technology had prevented physicians from running diagnostic tests, which could allow early detection of the Systemic Lupus Erythematosus (SLE), a chronic autoimmune disorder.

“We have no tools that can help us properly diagnose the disease before it reaches the advanced stages,” he said in a discussion on Lupus held by the Indonesian Institute for Sciences (LIPI). The talk was held to mark the launch of the Care for Lupus Syamsi Dhuha Foundation (SDF) Awards 2012.

Many Lupus sufferers, Rachmat said, received treatment in hospitals only after they suffered from severe cramps and other health problems such as kidney failure and pleural effusion or an abnormal accumulation of fluid in the lungs.

“This could happen because many physicians are unable to accurately diagnose the disease, which is indispensable to starting the correct course of treatment,” he added.

Globally, more than 5 million people in their productive age suffer from Lupus. The disease affects all body organs in the form of inflammation, which can lead to death. No data is available on the number of Lupus sufferers in the country, but some estimate the number at 300,000.

Females make up 90 percent of people with Lupus and about 85 percent are between the age of 20 and 60 years.

No study has identified the leading cause of Lupus but studies show that predisposition due to genetics often plays an important role in the development of the disorder. Factors that could trigger Lupus include excessive sun exposure and infection.

“Even helicobacter pylori, widely known as the leading cause of most cases of gastritis can trigger Lupus as well,” Rachmat said.

Because other illnesses have similar symptoms to those of Lupus, including weight loss, fever, anorexia, loss of appetite and arthritis, it is difficult for doctors to diagnose the autoimmune disorder.

Only between 30 and 40 percent of patients with Lupus experience skin symptoms, including malar rash or butterfly-shaped rashes on the cheeks.

Eko Tjahjono, the father of Lupus sufferer Bogie Soedjatmiko, said that when his daughter Minerva Soedjatmiko became very sick, at first doctors did not diagnose her correctly as having the autoimmune disorder.

“She was hospitalized for a week but we then brought her back home as internists diagnosed her as having chronic fatigue only,” he said, adding that the doctors told his daughter to get enough sleep and prescribed her with vitamins only.

Soon after, her condition began to deteriorate. She was soon wheelchair-bound.

“We then consulted another internist who diagnosed her with Lupus. It was quite a shock for the whole of our family,” said Bogie, who also heads LIPI’s department for science and technology partnership and dissemination.

The Care for Lupus SDF Awards offers research sponsorships for scientists to conduct original research on medication derived from natural sources including medicinal plants with the potential to be used to treat Lupus, as well as its symptoms to improve the quality of life of Lupus sufferers.

— JP/Elly Burhaini Faizal