Rising numbers of cases of children living with Lupus, an incurable autoimmune disease that causes chronic inflammation, has prompted a group to educate children about the disease through comic books and bilingual DVDs.
Chairperson of the Syamsi Dhuha Foundation, Dian Syarief, said the NGO is currently assisting 20 children under the age of 16, who are living with the disease. Some 300 people living with Lupus has joined the support group. We first assisted children living with Lupus in 2006 and each year, the number is increasing, she told The Jakarta Post in Bandung.
We should pay attention to the management and drug treatment for children with Lupus since they will have a longer lifetime, while the disease will challenge their mental and physical state for their entire life. The Indonesian Lupus Foundation also keeps the records of around 10,000 Indonesians living with the disease, nick-named the great imitator since its symptoms resemble those of many other diseases and it is subsequently often misdiagnosed.
Some 3,000 copies of comic books and DVDs entitled Luppy Sahabatku yang Nakal (Luppy, My Naughty’s Friend), have been launched since May this year to spread awareness to the community, and especially children, about the disease. The group has also set up a Lupus education group, called Lupus pada Anak (Lupus on Children), which started in August. The program is jointly conducted with Hasan Sadikin hospital in Bandung.
In the comic book and DVD, which was produced six months ago, the main character is named Luppy after the disease, which will stay with the patient once he or she is diagnosed with it. It was written in simple words, easily understood by children.
The story introduces Lupus as a chronic inflammatory disease which affects all body parts, mainly skin, joints, blood, liver and kidneys. The disease is not contagious but deadly, just like HIV/AIDS. If HIV/AIDS reduces one’s immunity, people living with Lupus experience excessive production of antibodies, which eventually disrupts the role of antibodies supposed to protect us from diseases.
We also introduce Lupus visually through DVDs to translate complicated medical terms into words, which are easily understood by children. Once the children are well-informed, they will accept the situation and live with Lupus, said Dian, who was diagnosed with Lupus since 1998 and helped set up the foundation in 2004.
She said the book and DVDs for the children were launched to assist families whose children are living with the disease but find it hard to explain the situation to them.
Children with Lupus will ask why they cannot stay under the sun and get tired like other kids. The situation has to be explained without having to make the children feel depressed, said Dian, one of the 28 recipients of Life Time Achievement Awards from the 9th International Congress on Sytemic Lupus Erythematosus (SLE) in Vancouver, Canada, in June this year.
In Bandung alone, the city’s Health Office estimated there are some 700 people living with Lupus. Pediatrician Budi Setiabudiawan said common symptoms of children with Lupus, who are seeking treatment at Hasan Sadikin, were fever, becoming easily tired, wounds on their mouths, declining appetite and loss of weight.
The hospital, he said, is currently treating 30 children with Lupus. It’s important to provide education and counseling for parents and children, such as on balanced diet, the use of sunscreen, infection prevention and immunization, Budi said.
Education on Lupus given through comics, DVDs
Yuli Tri Suwarni, The Jakarta Post, Bandung | Thu, 09/09/2010 | The Archipelago