Get to know EB, the Butterfly Children, and the EB Community in Indonesia
October is a special month for special children - the Butterfly Children, whose skin is as “fragile as a butterfly’s wings” from a genetic skin disorder. DEBRA Indonesia hopes to inform the wider community that EB is an existing and real skin disorder that requires considerable effort, treatment costs and attention from various groups of society, to enable Butterfly Children achieve their dreams.
Last year, DEBRA Indonesia focussed on increasing the awareness of the wider community and health workers through digital education, a webinar, and a community gathering.
Using technology, DEBRA Indonesia held :
Two education activities on Instagram - creating and publishing four of the latest infographics compiled by EB experts:
Epidermolysis Bullosa and Wound Care by Dr. Inne Arline Diana
Comprehensive Management of Epidermolysis Bullosa by Dr. July Iriani Rahardja
Nutrition in Epidermolysis Bullosa by Dr. Githa Rahmayunita and
Tips for Choosing Moisturizer for Epidermolysis Bullosa Skin Careby Dr. Srie Prihianti Gondokaryono, and
Two Instagram Live events:
"Blisters on the Skin of Infants and Children: Recognize Skin Disorders Rare Epidermolysis Bullosa and Its Treatment" led by Dr. Mirawati Setyorini and Dr.Nanny Shoraya, in collaboration with Orami (a lifestyle and wellness company)
"Getting to Know Epidermolysis Bullosa and the Community: DEBRA Indonesia" in collaboration with PERDOSKI (Indonesian Society of Dermatology and Venereology) and KSDAI (Indonesian Pediatric Dermatology Study Group) with speakers Dr. Niken Trisnowati and Mrs. Tatok Williams
A webinar, well attended by 900 participants, held with PERDOSKI and KSDAIT, on the topic "The Latest Update on Epidermolysis Bullosa: Pathogenesis and Management" was streamed on Zoom and Youtube Live, was aimed at the general public and health workers. It was structured to cover wide ranging topics of :
Ethical Considerations in Handling EB Patients by Dr. Inne Arline Diana
EB: Current Pathogenesis, Role of Genetics and Environment by Dr. Suci Widhiati
Comprehensive Management for EB by Dr. Srie Prihianti G
Dental Care for EB Patients by Prof. Dr. Arlette Setiawan, Sp.KGA, Subsp
Family Role for Mental Health of EB Patients by psychologist Adhityawarman Menaldi,
Prevention and Management of Contractures by Dr. Deta Tanuwidjaja
A meeting with EB patients and their families around Bogor and its surrounding area was organised to enable EB patients and their families to exchange experiences and share knowledge about handling EB on a daily basis. It was attended by five patients and their families, representatives from the local government and approximately 20 DEBRA Indonesia committee members and other supporting committee members. EB knowledge sharing sessions by the experts was followed by a Q&A session, a wound care workshop, a sponsorship session, a consultation session with dentists and paediatricians and was wrapped up with fun games for the participants prepared by the committee.
Adapted from a report provided by DEBRA Indonesia
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