By Euro Weekly News Media • 24 October 2016 • 8:31
BUTTERFLY SKIN (Epidermolysis bullosa) is a rare and incurable genetic disease characterised by extremely fragile skin. A simple hug can cause a blister. Normal day to day activities such as walking and eating that can lead to wounds that may take weeks or months to heal.
The blisters and wounds can provoke inappropriate comments or looks from the public which at times cause more distress to the children and families than the actual blisters. All of this results in the families feeling alone and isolated. It is for this reason that the condition needs more visibility.
On October 25, Butterfly Skin International Day, the Butterfly Children Charity DEBRA (the charity working to improve the quality of life for all those affected and their families in Spain) will mark the day with different acts of awareness. The aim is to bring the reality of the condition to the attention of society and to generate solidarity. The role of the media is vital to achieving awareness so we hope that we have your support.
As a symbol of solidarity for all those affected by Butterfly Skin there will be a giant butterfly placed on monuments in 4 Spanish cities for the duration of Tuesday 25th October. In Malaga the venue is Torre De la Alzaba and in Marbella the Piruli. The others can be found in Madrid and Valencia.
The Butterfly Children Charity DEBRA will have information tables from 10.30am in Plaza de la Aduana, Malaga and in Plaza de los Naranjos, Marbella (in front of the Town Hall) so the general public can learn about Butterfly Skin and have the opportunity to wear wings as a symbol of supporting the cause.
Last year, Butterfly Skin was a “trending topic” in Spain thanks to the on line campaign created for International Day. This year the charity is preparing a new surprise campaign that aims to give wings to all those who support the Butterfly Children Charity. The campaign will be revealed on October 25 at 10am via the charity’s social media networks Twitter/Facebook (@pieldemariposa) and Instagram, (pieldemariposa_debra) and will be supported by celebrities such as “Gemelliers” and “El Sevilla”.
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