Learning about Butterfly Children in Vietnam
Epidermolysis Bullosa is an inherited skin condition which causes a child's skin to blister and peel at the slightest touch, resulting in chronic pain that has been likened to that associated with third-degree burns. The children's skin is said to be as fragile as a butterfly's wing, and daily bandaging is required to protect and treat their wounds.
In low income countries, children with EB do not have access to the health care, supplies and support that is available in higher income settings, and in November 2011 CLAN was invited by the Director of the National Hospital of Pediatrics in Hanoi to help the staff and families of NHP start an EB Club. With 50 children presenting to NHP for management of EB, the hospital is keen to utilise CLAN's Streategic Framework for Action to find sustainable, community-development based solutions to help children with EB in Vietnam enjoy the highest quality of life possible.
CLAN is committed to working in partnership with others to help the EB Community of Vietnam find their wings, and we look forward to collaborating with all interested parties to effect change for children living with EB in Vietnam.
Interesting Links:
DebRA Australia Inc - National Dystrophic Epidermolysis Bullosa Research Association of Australia Incorporated
HOW - Helping Orphans Worldwide - working with children with EB in Vietnam
DebRA Canada - includes links to all international DebRA groups.
International EB Awareness Week Information - held every year in the last week of October
DebRA Article - Visit to Vietnam - an EB training mission, August 2011
Fast Facts on EB - An Easy-to-Read Series of Publications for the Public
VIDEO - What is Epidermolysis Bullosa? A Classroom Video (DebRA).
Teen rises above rare skin condition
Information on EB in Vietnamese -
Vietnam News article on EB - Nhiều trẻ bị bệnh thượng bì bóng nước hiếm gặp
Other articles on EB in Vietnam:
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