The most painful condition you have never heard of

One little girl living with the pain Credit: Leticia Pellicer

INTERNATIONAL RARE DISEASES DAY: Symptoms of Hope
DEBRA Butterfly Children’s Charity, founded in Marbella, is appealing to government agencies to cover the cost of the much needed, specialist, EB team of nurses that work tirelessly to support and care for children with Butterfly Skin.
These costs are currently met by the charity:  DEBRA Spain is the only national support system available for families with Butterfly Skin:  a rare and currently incurable disease that causes extreme fragility of the skin.
The charity is also bidding for further investment into research and appealing for more commitment and greater financial support.
Within the framework of International Rare Diseases Day which takes place today (February 28), DEBRA has joined the “Symptoms of Hope” campaign powered by the Spanish Federation for Rare Diseases (FEDER) to raise awareness for people with Butterfly Skin during the pandemic.
The health crisis has dramatically increased the vulnerability of these children, as they face delays in treatment and limited access to medical care.
Most charities are facing a very difficult situation and this is certainly the case for the Butterfly Children’s Charity, a non-profit organisation working to improve the quality of life for children with Epidermolysis bullosa: a rare, genetic and currently incurable condition that causes extreme fragility of the skin.
“Children with EB are frequently referred to as Butterfly Children because their skin is as fragile as butterfly wing. The essential protein, which binds the layers of the skin together, is missing, leading to social isolation, lifelong disability and extreme pain” explained Evanina Morcillo Makow, Director of the charity.
This incredibly challenging, life-limiting disease affects 500 people in Spain and DEBRA is their only national support system in place.
They are currently struggling financially and are appealing to the government to take some responsibility and help with the cost of the specialist nursing team.
As a consequence of the global pandemic DEBRA is now facing a devastating financial crisis.  Despite salary cuts and reduced spending the charity lost over 80 per cent of its funding in 2020.
The charity shops have faced closures and restricted opening times and fundraising events have all been cancelled. The specialist team are an essential lifeline for children and their families and we must do everything we can to ensure that they can continue to work to improve the quality of life for patients with EB.
By making a donation or by becoming a member today at www.pieldemariposa.es you can really make a difference.
Thank you for taking the time to read this news article “The most painful condition you have never heard of”.

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Written by

John Smith

Married to Ophelia in Gibraltar in 1978, John has spent much of his life travelling on security print and minting business and visited every continent except Antarctica. Having retired several years ago, the couple moved to their house in Estepona and John became a regular news writer for the EWN Media Group taking particular interest in Finance, Gibraltar and Costa del Sol Social Scene. Share your story with us by emailing [email protected], by calling +34 951 38 61 61 or by messaging our Facebook page www.facebook.com/EuroWeeklyNews

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