Epidermolysis Bullosa

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 International

DebRA New Zealand

DebRA Canada - includes links to all international DebRA groups.

International EB Awareness Week Information - held every year in the last week of October

EB Info World

DebRA Article - Visit to Vietnam - an EB training mission, August 2011

EB Support Groups

Fast Facts on EB - An Easy-to-Read Series of Publications for the Public

NIAMS Q&A on EB

VIDEO - What is Epidermolysis Bullosa? A Classroom Video (DebRA).

Teen rises above rare skin condition

Researchers meet milestone in developing epidermolysis bullosa gene therapy

Information on EB in Vietnamese -

Other articles on EB in Vietnam:

- Đau đớn những sinh linh “bỏng” từ trong bụng mẹ

-  A Poor Child Living with EB