The Truth Lies Beneath
THE DEBRA Butterfly Children’s Charity has launched ‘ The Truth Lies Beneath’ campaign to raise awareness for Epidermolysis bullosa ( Butterfly Skin), and to show the reality of what it is really like to live in pain every single day.
The charity acts as a fundamental support system for children with Epidermolysis bullosa and their families. The condition is also known as Butterfly Skin because their skin is as fragile as a butterfly wing. EB is a rare and incurable disease that currently affects 500 people in Spain. The lightest touch causes severe blistering and open wounds that never heal. This condition causes lifelong disability, extreme pain and social isolation.
A video, which can be viewed at the Facebook page butterflychildrencharity ( provided by DEBRA USA), shows one minute out of the three hours of daily treatment that a little girl has to endure every day of her life.
The EB International awareness day is an opportunity to raise awareness for the Debra Butterfly Children’s Charity: an organisation so devastatingly affected by the crisis caused by the coronavirus pandemic. They must find the resources to continue to guarantee support for their families.
October 25, 2020, the EB International Awareness day is an important opportunity to show the world what it is like to live with this condition.
“The skin of children with EB lacks the protein that makes our skin resistant to touch, scrapes and bumps. Their skin must be protected by extensive bandaging on a daily basis to protect it from even the lightest touch,” commented Evanina Morcillo Makow, director of the charity.
The protagonists of this video are Rafi and Jackie, daughter and wife of Brett Kopelan, director of DEBRA
US. Jackie talks of the despair, isolation and helplessness that she felt when she found out that her daughter had EB.
“With this video we would really like to convey that the reality of living with this condition goes beyond the bandages and daily treatments. There are so many other physical, psychological and social barriers that affect the day to day. The simple act of eating, walking or a hug can be extremely painful and affects everyone around them,” explains Evanina.
For further information contact Mary Chambers on 616 076 072