Dian Syarief has been suffering from low vision since Systemic Lupus Erythematosus struck her 11 years ago. The disease, better known as Lupus, has forced Dian to live with various sacrifices. For instance, she cannot look at a wristwatch. Instead, Dian presses a button on her watch that speaks to indicate the current time.
Even more than that, Lupus has also forced Dian to undergo major surgeries 18 times! "One of those surgeries was performed to remove my uterus," she said.
Lupus struck in 1999 when Dian was 33 years ago. At that time, the woman born in Bandung on December 21, 1965, was working as an employee at a private bank in Jakarta.
For the first two years, Dian had to go back and forth to the hospital to undergo surgeries and a number of therapies because the Lupus in her body had caused many complications.
Those times occasionally left her shocked and weary. "What hit me the hardest was when the effects of the therapy I underwent caused me to lose my sight and left me unable to walk," she said.
Because of this, Dian felt that the first five years since being diagnosed with Lupus were a heavy period in her life. She had to fight to heal herself, even though her physical and mental state dropped to its lowest point several times.
However, since 2004, Dian began to recover herself. Little by little, she started to rise up. In fact, rather than just thinking about efforts to heal, Dian also began to help others who shared the same fate. "I started sharing and providing motivation to other people," she said.
This turning point was triggered by Dian's awareness from entering the operating room repeatedly. Every time she regained consciousness after surgery, she felt grateful that God still gave her an opportunity to live. "At that time, it crossed my mind that maybe this is an opportunity for me to help others," she said.
Thus, Dian began to think that simply expressing gratitude to the Creator was not enough. Furthermore, Dian wanted to do something concrete for others. In 2004, together with her husband, Eko Pratomo, she founded the Syamsi Dhuha Foundation (SDF), a non-profit NGO that gives special attention to Odapus (people living with Lupus) and low vision sufferers. "I want the rest of my life to be meaningful for others," she expressed.
According to Dian, through the Care For Lupus program, SDF wants to encourage Odapus and the families accompanying them through various beneficial activities. In addition, the activities are also aimed at the wider community.
"Our dream is to give everyone, not just Odapus, the opportunity to be grateful for all the blessings Allah has given. The way to do this is by conducting various activities that can be beneficial for oneself, as well as for others," she said.
Among SDF's activities is providing training and motivation to Lupus sufferers so they can rise again from despair. Some training alumni, for example, have obtained certification in the field of shiatsu so they can work again. "Despite the full limitations, we want them to remain independent and not depend on others," Dian explained.
SDF also conducts advocacy for Lupus sufferers who face pressure at their workplaces. For instance, giving explanations to the respective companies to help them understand the condition of Lupus sufferers who might suddenly faint while working, or who have limited vision.
Dian alongside SDF also printed comics to give the wider public an understanding of what Lupus is and how it affects people. "We chose comics to be more communicative so that it can be understood by everyone, even by children," she said.
Another activity of this foundation is facilitating various scientific researches. In addition, since 2006, SDF has been striving to provide affordable medicine for Odapus. This year, SDF has also proposed an increase in the ceiling of the Community Health Insurance (Jamkesmas) for underprivileged Odapus (OKM) to the Ministry of Health of the Republic of Indonesia.
Iwan Apriansyah – Tribunnews