After one couple experienced lupus firsthand, they started the Syamsi Dhuha Foundation to fight the disease.
For Dian Syarief, it started as a simple skin rash in 1999. Soon thereafter her red blood cell level dropped to 10% of normal levels. A test confirmed the worse: she had Systemic Lupus Erythematosus, one of the three kinds of lupus. She was 33 at the time. Despite many drugs and surgeries, Dian remains badly affected by the disease. She has only 5% normal vision and her hearing is also impaired. Due to her drug therapies, she can easily catch other illnesses. She was forced to quit her job as a public relations manager at Bank Bali in 2000 as well.
Dian’s personal experience in dealing with lupus inspired her and her husband Eko Priyo Pratomo to form the Syamsi Dhuha Foundation (SDF) in 2003 in their hometown of Bandung to spread awareness about the disease and help others afflicted by it. Ekobelieves everyone has the ability to dedicate their lives for a cause. “You don’t have to wait until you are a tycoon. Ordinary people can do what they can as according to their own abilities. It never crossed my mind to create a lupus foundation until my wife got the disease,” says Eko.
It is estimated that lupus affects at least five million worldwide, including 200,000 in Indonesia. Some 90% diagnosed with the disease are women, and it is especially prevalent among Asian women. Awareness of lupus lags behind other illnesses. According to a recent national U.S. poll of 1,000 adults done by the Lupus Foundation of America, 39% knew nothing about the disease besides the name and 22% had not even heard of the name. Lupus works in the opposite way of AIDS. Rather than suppress the immune system, Lupus puts in the immune system into overdrive, and it starts to attack the body’s healthy cells. “With lupus just like with AIDS, there is an iceberg phenomenon. There are more patients than the data says,” says Tiara Savitri, founder of the Lupus Foundation of Indonesia, another support group for lupus in Indonesia.
Lupus has a mortality rate of 26%, comparable to coronary heart disease, the leading fatal disease in the country. Lupus can also have a major impact on the families providing care, since only 1% of Indonesians have health insurance. “It has a snowballing effect since it could be a mother or a daughter. The expense of the treatment could cause financial disruption in the family,” says Eko, 48.
Syamsi Dhuha’s name is derived from Arabic meaning “morning light.” It implies that there is hope every morning at the start of a new day. The foundation started simply with ten people having a group discussion. Now it has hundreds of members from all over the country. “We didn’t know much about the disease back then and had difficulties finding the right doctors. We wanted to share our experiences on how to live with lupus. We hope it will lessen the burden held by other lupus patients. It is easier to face lupus together, instead of alone as Dian and me did years ago,” says Eko. The foundation’s main activities are for individual or group support for those with the disease and their families and promoting public awareness of lupus.
The foundation together with the Lupus Foundation of Indonesia has been working to persuade the Health Ministry to provide subsidized medicines for those with lupus, as treatment now is quite expensive for most families. Starting with a petition signed by 1,500 in 2006 delivered to the ministry, the couple are now glad that some of drugs for lupus are now included under the social health security program category, starting in 2010.
The foundation is also working with hospitals around the country to identify new patients. “Every time there is a new patient, these hospitals will inform the foundation and then a volunteer will contact and visit the patient and give them information about lupus,” says Dewi Nastiti Lestari Ningsih, who has been working for four years as a SDF volunteer. The foundation is also on Facebook, in order to reach those who live outside Java and abroad.
Seeing a growing interest in the foundation, Eko switch from his full-time position as president director in financial firm BNP Paribas Investment Partners in 2010 to a less time-consuming position as a senior advisor to the company. “Now, I can spend 40% of my time to develop this foundation,” he says.
One activity to raise awareness was the Care for Lupus SDF Award, which was first presented in 2011 to commemorate world lupus day on May 10. At the event, the foundation gives awards to those who are helping fight the disease with research and other activities. Eko found his inspiration in the International Lupus Congress, an annual global event. At the congress in 2011, Dian received a lifetime achievement award for her dedication to fighting lupus in Indonesia.
Eko hopes the foundation could become more financially solvent. At the moment, it depends on ad hoc donations. He would like to build a greater donation from zakat, the Muslim practice of charitable giving, and get funds from business activities such as consulting. To help with funds, Eko donated a three-storey house in Bandung in 2011 to use as the foundation’s headquarters, but rents out some of the rooms to tenants. Previously, the foundation was based in Eko and Dian’s house.
In the long run, Eko hopes to build an integrated treatment center that provides consultations with various specialist doctors. Lupus is a complex disease, as its symptoms often resemble other diseases, and is often found with other illnesses. Often lupus patients waste much time, energy and funds going to many doctors or hospitals from different treatments. Therefore, the foundation aims to have everything in one place. He realizes it will take much time and effort to create this center. “That is my biggest dream. Maybe it’s not mine to see, but the next generation will do it. Until then we will keep doing the best we can,” says Eko.
* This story appears in the January 2012 issue of Forbes Indonesia magazine. It has won Care for Lupus SDF Awards 2012, 3rd winner. The awards is given by Syamsi Dhuha Foundation, Bandung-based foundation, for writers who have wrote and socializing about Lupus. Photos by Ahmad Zamroni.