Supporting people with Epidermolysis Bullosa in Vietnam and Cuba

7 May, 2019

DEBRA in Spain is the founding member of the international network of DEBRA groups supporting people with EB in countries where the support system is currently inexistent.   Our network includes “DEBRA without borders” which is made up of a group of professionals and volunteers who travel beyond their frontiers to help others. 

 

Visiting Vietnam 

The co-coordinator for family support from Australia, Simone Baird, travelled to Hai Phong in Vietnam along with two other volunteers to meet families with EB.  The Australian team focused their efforts on making home visits to affected families, using the time available to explain how to bandage and treat wounds correctlyso as to minimise pain and infection.  They also gave a talk to healthcare professionals on caring and treating patients along with underlining the importance of nutrition and specialist bandaging materials and medicines. 

The families all received a special kit with various different types of bandaging materials, nutritional supplements, wound creams, and other useful items. 

The support given to both families and healthcare professionals has helped to improve and influence the standard of care available.  It has opened up a line of communication for families who had previously felt isolated and alone, coping with aunknown condition in a country where they were receiving little or no support. 

Travelling to Cuba 

DEBRA without borders has travelled to Cuba on numerous occasions in the last few years: A country where families receive minimum support and very limited access to treatment.  There are currently 200 people in Cuba living with EB. 

National meetings for families with EB have grown from these visits.  These meetings promote communication between families and have become an important support system for everyone to access.  DEBRA Spain collaborated by putting together information on wound care, bathing, starting school, nutrition, etc.  Families were overwhelmed and so grateful for the level of support offered by DEBRA.   

 “There are no words to describe how grateful we are.  These meetings would not have taken place without the help from DEBRA.  We would like to thank you on behalf of all of the people with EB in Cuba. Thank You! 

Thanks to the passion with characterises the DEBRA international network teams, a group of health care professionals in Cuba are now collaborating to create a specialist healthcare division for EB.  The Butterfly Children’s charity in Spain, DEBRA Mexico and DEBRA Chile are supporting the establishment of these groups, which will act as a real lifeline for so many affected Cuban families. 

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