Care for lupus. Your caring saves lives. Never give up. These are the favorite mantras coming from Dian Syarief Pratomo to enliven the spirits of people living with lupus.
Through those mantras, she tries to let people know that a strong will and the attention of those close to you are keys to assisting those living with the deadly and incurable disease.
Living with lupus, and surviving, is not a cause of regret for the 46-year-old woman, who was born in Bandung, West Java on Dec. 21.
She lived a normal life — going to school, college and work before getting married to Eko Pratomo.
Diagnosed with lupus in 1998 turned her life upside down.
She struggled to survive the disease that attacked her blood circulation system and affecting her sight. She ended up suffering from low vision.
“I was having a normal life like everybody else. Life as usual, going to school, work and getting married, all for me, not thinking of anyone else,” she recalls.
Surviving the critical period after going through abscess surgery, which suppressed her vision, was a blessing.
She was flown to Singapore for the surgery. The abscess was blamed on consuming high dosages of steroids to treat her disease in the first year after being diagnosed with lupus.
“I had the surgery at the same time as another man from Surabaya. He did not make it and his wife was crying. At that time, I realized that I was given a privilege, a second chance, to live my life,” said Dian, who had a fine career in marketing and corporate communications at a major private bank before falling sick.
Dian was aware that at that time, lupus was a rare disease. Her pharmacologist father could only cry facing her condition. At that moment, Dian was fully aware she could only help herself and learn more about her disease. She then launched a personal quest to find doctors and read more on the Internet.
With her husband Eko, she later decided to dedicate her life to people living with lupus and low vision, setting up the Syamsi Dhuha Foundation in 2003. The foundation is the only support group for people living with lupus and their families in Bandung.
As lupus is still rare — even doctors often misdiagnose it as kidney, typhus, joint inflammation or other diseases — patients and their families are badly in need of mental and physical support as they have to change their lifestyle to survive.
Currently, the group has assisted 370 people living with lupus and 30 others suffering from low vision.
The group, a social foundation, is managed professionally, launching education and familiarization programs as well as conducting research on the incurable disease. It provides training for medical people, from nurses to doctors, as well as providing online services by phone, email and through social networking sites like Facebook.
“The concept is to conquer boundaries and time. We had people from England and India contacting us online, just in search of friends or to share experiences,” Dian says.
A mother, who saw her on a talk show on TVRI, even contacted her child, who lives with lupus, to call her from Australia to become her friend, she added.
Each year, her foundation sets a target to publish a book, an album or CD on lupus and the experience of people living with the disease. It also holds different activities such as the Walk for Lupus, Lupus Goes Green, Lupus Goes to Campus and Lupus Goes to School.
“These familiarization and education programs are crucial since many people still think Lupus is a cursed disease since it leaves a butterfly-shaped rash on one’s face,” says the woman, who has undergone 20 surgeries since diagnosed with the disease.
“A mother once asked me to look after her daughter, whispering a message not to say anything about her disease, fearing that no man would marry her,” said Dian, one of 28 recipients of the Lifetime Achievement Awards from the committee of the 9th International Congress on SLE [Systemic Lupus Erythematosus] in Vancouver, Canada in June 2010.
High treatment costs for lupus made Dian think there was a need to find cheaper but effective alternative treatments from the country’s rich herbs, taking into account people’s high interest in using herbal medicine, but there is little support to fund its research.
For World Lupus Day, celebrated every May 10, the Syamsi Dhuha Foundation holds a research sponsorship program called the Care for Lupus SDF Awards 2011 to help finance research to find natural ingredients that can work as therapy supplements in the treatment and/or in controlling lupus.
The sponsorship program, which aims to improve the quality of life for people living with the disease, netted five finalists, each entitled to Rp 30 million in research funding.
The government’s attention to the disease, which is not contagious but deadly, is still low.
When meeting with the health minister back in 2006, Dian brought some 1,500 signatures to demand access to cheap medicine for people living with lupus.
“The minister asked, ‘how many patients were there?’ I told her that at that time, it was around 200,000 people. She then replied, ‘not much then’,” said Dian, who claimed she was shocked by the minister’s reply.
Aware the disease has yet to become a government priority, she was not discouraged — believing that with or without government assistance, the number of people living with lupus would continue to grow and they have to survive.
In order to get the foundation going, Dian and Eko, who have no children, donated their assets to the foundation’s office in the DKK complex in north Bandung and its facilities.
They also received donations from different donors to be channeled to poor people living with lupus and to organize the foundation’s programs.
“Back then, I worked from nine to five. Now I have to be ready for 24 hours, from taking phone calls and texts, handling orders for books and assisting sick patients from home to the emergency room,” says Dian, who can only rely on her ears to do most of the jobs thanks to the Braille Reader program on her cell phone.
In the future, the foundation is set to be financially independent with rental money coming from 25 boarding rooms that are ready to accept tenants sometime this year.
Despite her bad vision and a rubber tube planted on her brain, and another brain surgery three months ago to cure an infection, Dian works enthusiastically, a smile never leaving her face.
“My husband and I dream that someday, when we are gone, the foundation can grow into something like the Helen Keller Foundation, which does not work only in Bandung but internationally.”
— Yuli Tri Suwarni
