Tangerang, Banten, 25/8/2009 --
It is a hot sunny day in the city of Tangerang. The woman is sitting on a long wooden bench of a mobile small food vendor. She wears a white T-shirt, bluejeans and box-shaped glasses that match her short hair. A big tree not far from the bench shadows her, protecting the woman from the suffocating sunlight.
The 28-year old Dini Kusumawadini, the woman’s name, comes from a family of six. She is the second child in the family. They live in Legoso Permai, Ciputat, a densely populated sub-district in the Banten Province of Indonesia. Not long after graduating from High School, Dini worked in a towel factory. Her job was to wrap towels into nice packaging for future sales. Every day, she inhaled dusty air and soft fiber while doing the chores. With constant respiratory problems for almost two years, Dini gradually became less productive at work. After experiencing endless coughing for some time, she decided to quit her job.
“I felt ashamed be around people I was coughing at all times, non-stop,” says Dini. “I took common cough medicines sold in the small shops but my cough did not go away. Every morning, I woke up shivering. My body felt so weak. I often thought I would never made it through the day,” she added. In the afternoon, she frequently became feverish, lasting through the night.
After months suffering from the cough, she went to get alternative medication, hoping that the non-clinical treatment would swap away the torment. Unfortunately, it did the opposite. The cough was getting worse. It was not long after that Dini decided to go to PUSKESMAS, the Community Health Centre in her neighborhood. From there, she was referred to a Pulmonologist where she found out that she had advanced Tuberculosis.
“It was a shock to me to find out that I had TB. My brother Dana had TB before. I should have been familiar with the symptoms but I guess I never thought it could happens to me,” says Dini, admitting her ignorance to the obvious signs of the disease.
Combating the disease
Tuberculosis is a serious issue in Indonesia. The disease is declared the number one killer amongst the communicable diseases in the world. Each year, in the country which is home to 226 million people, there are a quarter of a million new TB case found. One hundred and forty thousand (140,000) people die from TB every year in Indonesia. Indonesia is number three (3) on the list of countries posting TB fatalities in the world, after India and China.
Through the USAID-funded MITRA Project, CARE is fighting the disease, which disproportionately affects the poorest and the most vulnerable, in four cities and districts in Banten Province. Within the frame of the national intervention strategy for TB, Directly Observed Treatment, Short-course (DOTS), CARE focuses on two key elements; Standardized, short-course chemotherapy of 6 to 8 months with direct observation of treatment and Information Systems for monitoring and recording of treatment outcomes.
In Indonesia, there are various stigmas and kinds of discrimination associated with TB. Many think that TB is an inherited disease; some thinks that it is a curse and therefore, incurable. The stigmas lead to discrimination and isolation of the infected and their families and became great barriers to providing adequate care and preventing further infections in the community. “When I knew I was infected by TB, I feel so alone. I feel isolated from my own community; my friends, my neighbors,” Dini utters in a weak voice.
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 Dini Kusumawadini, 28, was infected by TB. After fully recovering, she became a TB counselor, helping others to get the correct information and proper medications for TB.
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The Paguyuban
As effort to eliminate the social stigmas, CARE supports the Government Health Offices to facilitate the formation of support groups; or in local language the Paguyuban. The group consists of TB patients and their families, health workers, community and religious leaders, and other volunteers from the community. As group members, their main roles are to spread the correct information about TB to the community in their surrounding areas and refer TB suspects to the health office for further examination and treatment. In addition, they also act as treatment observers; someone who ensures that the patient takes the proper medication in a timely manner.
“Our experience shows that peer to peer consultation is very effective, especially if it involves an ex-TB patient. After the ex-patients share their experiences, the group tends to be more open and accepting,” says Dr. Rahmat Setiawan, MITRA Project Manager. “To achieve greater impact, we also involve the Health officers, the community and religious leaders in the area.”
Dini was first introduced to the initiative in March last year when she was having her treatment at the local Community Health Centre (Puskesmas). Moved by the cause, not long after participating in a two-day training on TB, Dini joined the Paguyuban. As a member of the group, she enthusiastically plays her role as a TB counselor.
“As someone who is infected by TB, you tend to think that you are no longer useful to others. But by becoming a TB counselor, I feel that I have power to help others, says Dini, explaining why she enjoys so much being a counselor. She slowly approaches her friends and neighbors, tries to give them information about TB. It is difficult at first, she said, but after a while, after they know that she is part of the wider movement against TB and trying to help, they started to listen to her. “Soon after, they began to ask more questions and be more open.”
Until today, Dini has helped several of her neighbors take a TB test. Three of them are positive for TB and are now getting the proper treatment. Besides dedicating her time to becoming a TB counselor, Dini runs her own small business; selling decorated plants in the front yard of her house; Rose, Jasmine, Agloanema, Anthurium, and many others. Happy with her life as it is, the woman pledges to continue being a TB counselor and making herself useful for others. “I want them to know that even when they are sick, there are people who still care.”
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