LIVING WITH LUPUS

Koran The Jakarta Post

Edisi 15 Mei 2011

When diagnosed with the dangerous autoimmune disease lupus back in 2009, it was a life changing moment for Yune Wahyunaniah. Every time she left home – sunblock, an umbrella, sunglasses and drinking water became her best friends.

She left confused. Her body resisted antibiotics and other synthetic or chemical-based medicines, a condition she developed after consistently taking the medicine to deal with the disease’s symptoms – pain in her joints, regular fever, back pain and constant weakness – since 1990.

“I was once diagnosed with a liver illness and typhus. When I had flu, it lasted longer than ordinary people. Sometimes it lasted up to three months and I had to take antibiotics constantly,” the mother of two says.

In the meantime, her doctor continued to provide her with steroids for her lupus treatments, pushing the resident of Margahayu Raya in the West Java capital Bandung to find alternative medicines to deal with her illness. The chemicals she consumed made stomach sensitive and made her prone to fevers and nausea.

 

With an umbrella and sunglasses, Yune Wahyunaniah is ready

to go on her routine. JP/Arya Dipa

Finding alternative medicine became her priority since her medicine could not help her deal with her painful symptoms.

“When it flared up, I couldn’t stand, and I couldn’t sit long. Even when I was touched, it was killingly painful,” she said.

Her search for alternative therapy was fruitful after she met a doctor who opened a herbal clinic. “I was given herbal treatments to drink,” she says.

When her lupus flared up and her joints hurt, she followed her doctor’s advice and started leech therapy. The leech sucked crystallized blood from her sick joints.

Currently, she enjoys a normal life but still has to use sunblock, an umbrella and sunglasses whenever she’s out of the house. Her bouts with the flu now last for two weeks at most and she has returned to her daily routine – selling encyclopedias and taking her children to school.

“Back then, when the disease struck, I could be hospitalized for three months,” Yune said.

Around the world, it is estimated there are five million people living with lupus – an incurable autoimmune disease that causes chronic inflammation

It is nicknamed “the great imitator” since its symptoms resemble those of many other diseases and it is subsequently often misdiagnosed. Some 300,000 lupus sufferers are found in Indonesia.

The disease is not contagious but it is deadly, just like HIV/AIDS. But unlike HIV, when a patient suffers a decline in immune system function, people living with lupus experience an overproduction of antibodies, disturbing the immune system’s function.

Alternative medicine also became Agus Supariyanto’s choice when his youngest daughter, 10-year-old Yeni [not her real name], was diagnosed with lupus in January.

Starting out with joint pains and fever, Yeni was taken to a big hospital in nearby Cirebon from her home in the West Java town of Indramayu. The fourth grader was diagnosed with a sore throat.

But after treatment with antibio-tics, her fever was still raging and she was later diagnosed with typhus since the doctor detected a high number of Salmonella thyposa bacteria in her body.

“She was given more antibiotics. Ten days after leaving the hospital she was sick again. She was feverish. She was losing lots of weight, from 40 kilograms to only 33 kilograms,” Agus said when taking his daughter for a routine check-up at a Bandung hospital.

Seeing that his daughter, who was later diagnosed with lupus at a hospital in Bandung, still had to constantly take chemical-based medicine as part of her lupus treatment, Agus was worried about her kidneys.

Agus and his wife were unhappy with hospital’s therapies after going back and forth from Indramayu to Bandung to get better treatments. In a short time, the treatments had exhausted some Rp 60 million they had saved for a hajj pilgrimage.

 

Doctor Puti Rita Liswari (right) checks her patient using life blood analysis method 

at her clinic in Bandung. JP/Arya Dipa

“After checking out the hospital, she has to return a month later for a check-up. She’s feverish again and had to be hospitalized again. But she’s not getting better,” said the father of two who works in Bandung.
Information from a friend led him to an alternative clinic in Bandung, where he got different herbs to treat Yeni.

“After using the herbal medicine, her fever stablized. Her joints don’t hurt anymore so she can attend school although she has to catch up with her studies,” Agus says.

He still took Yeni to Bandung every two weeks for routine check-ups.

“We still use medicine provided by the doctor, but not the antibiotics. We’re afraid of their effects on our daughter,” said Agus’ wife, Dewi, who follows instruction to routinely apply sunblock to her daughter’s skin whenever she goes outside.

Dr. Puti Rita Liswari has also been living with lupus since she tested positive four years ago.

Puti, who adopted a “back to nature” lifestyle since after studying at Leiden University in the Netherlands in 2002, also turned to herbal medicine. She had been experiencing symptoms – joint pain and menstruations that lasted two weeks longer – since she was in junior high school.

The disease hurts Puti more on her skin.

“My skin feels like it is being slit by razor. It bleeds when it is touched by a shallot. My skin breaks when I used soap. My skin is never perfect, it always broken up,” Puti said.

Puti, who is also an executive at the Indonesia Medical Herbal Doctors Association, works together with a herbalist who had 30 years experience in China.

Earlier, Puti only provided herbal therapy to patients suffering from a cytomegalovirus [CMV] infection since she had the experience of providing the herbal therapy to her husband, who was cured after suffering from a CMV infection thanks to natural therapies.

“I’m grateful that I can put into use natural remedies to treat my own body,” said Puti, who once could not stand on her own feet when the disease hit.

She usually tried the herbal remedies she would use on herself before giving them to her patient. A patient would also be asked to identify the needs of his or her own body, including how to turn positive motivation into positive energy.

A herbalist, she said, would usually prepare 15-25 herbs and other natural ingredients to treat a patient.

“I always tell my patient to give it a try and carry on if it fits them,” said the woman, who had job training in three hospitals in Denver, in the US in 1996-1997.

In her current practice, she writes prescriptions using different herbs and natural ingredients for her patients to purchase in herbal stores, such as Babah Kuya in the Pasar Baru market in Bandung.

Lifestyle, she added, played the biggest role in improving health.

“Herbal remedies just calm lupus’ activities, the inflammation. There’s still a need for nutrition to regenerate cells, drinking water to help the body pump out the waste, regular exercise and no stress,” she said.

Dian Syarief Pratomo, who has been living with lupus for 13 years, also saw a rising trend in the use of herbal medicine to deal with lupus with little research done on its medical justification.

“People living with lupus, or any sick person, does not want to suffer side effects from using synthetic and chemical-based medicine. There’s hope for cheaper medicine,” said Dian, who set up a support group for people with lupus — the Syamsi Dhuha Foundation (SDF) — with her husband, Eko Pratomo.

Dian once suffered from a brain inflammation due to high-dosage steroid therapy the first year she was diagnosed with the disease.

The former public relations employee at a private bank said that current lupus therapy was still based on standards established in 1955.

In the meantime, the drug industry has put a high price on the latest immune suppressor drugs. Alternative treatment have becomes an option due to high medical costs, which might reach up to Rp 2 million (US$234) a month.

Medicine for lupus patient suffering from joint pain such as Rituccimab, which requires four doses per treatment cycle, costs Rp 60 million. The latest drugs might cost a patient more than Rp 300 million a year.

“So when a new drug is released, people living with lupus will yell happily, but when they hear the price, they feel helpless again,” said Dian, one of 28 recipients of a Life Time Achievement Award from the 9th International Congress on Systemic Lupus Erythematosus [SLE] committee in Vancouver, Canada in June 2010.

And to observe the World Lupus Day, which falls every May 10, SDF initiated a research sponsorship — the Care for Lupus SDF Awards 2011 — to help those researching the country’s natural ingredients to find therapy supplement and or herb to deal with lupus.

Dian said the effort to find alternative treatment, which is medically justified and affordable, for lupus should be launched.

“Usually, I consume dates to boost my thrombosites although there is no research why dates can increase it. We hope research will help finding out what is the right and effective dosage.”