GUEST POST: Celebrated on 28th February, Rare Disease Day raises awareness of rare diseases and their impact. DEBRA Butterfly Children’s Charity tirelessly supports one of the many rare diseases that exist in Spain – butterfly skin
Butterfly Skin or epidermolysis bullosa (EB) is a rare and currently incurable disease 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. This leads to social isolation, lifelong disability and extreme pain” explained Evanina Morcillo Makow, director of the charity.
DEBRA Spain – the only national support system available for families with EB – is appealing to Spanish government agencies. They want aid to cover the cost of the much needed specialist EB team of nurses that work day and night to support and care for children with Butterfly Skin. The charity currently covers these costs. DEBRA 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, DEBRA joined the “Symptoms of Hope” campaign. Powered by the Spanish Federation for Rare Diseases (FEDER) it will raise awareness for people with Butterfly Skin during the pandemic. They are facing a care crisis as a consequence of the pandemic. The health crisis has dramatically increased the vulnerability of these children. They now face delays in treatment and limited access to medical care.
Reduced financial support
Like most charities, Butterfly Children’s Charity is in a very difficult situation with sharply reduced financial support due to restrictive corona measures. DEBRA is the only national support system for the 500 people in Spain with this incredibly challenging and life-limiting disease. 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.
“We must unite in our efforts to be able to continue offering our families the same level of support and care they urgently need. This support is in place for people with EB both in the UK and the US. We hope the Spanish Government will listen to our plea.” said Evanina. The charity needs help now, to support the specialist health care team in charge of training and offering guidance to National Health service medical professionals, as well as supporting families from the birth of a child with EB. “In the case of a new born the team are dispatched within 48hrs to any area in Spain to be on site with families to support them at this extremely difficult time”
Throughout the pandemic the charity revised its methods to ensure families continue to find the support they need. They now offer medical support on a 24hr advice line. They also launched a series of webinars to help with guidance and training on care and treatments available for EB.
Investment in research
Covid-19 has taught us that if we join forces on both a national and international level we can come up with better solutions. As a consequence we are hoping that these efforts will translate into greater investment into research for Butterfly Skin. “There are a number of lines open for research, centred on the use of stem cell treatments to improve wound healing in patients with Butterfly Skin. But, there is so much more we can do with the right funding and research”, said Natividad Romero, Social and Health Care Manager for DEBRA Spain.
As a consequence of the pandemic, DEBRA Butterfly Children’s Charity is facing a devastating financial crisis. Despite salary cuts and reduced spending the charity lost over 80% of its funding in 2020. The charity shops face closures and restricted opening times. Fundraising events have all been cancelled. The specialist team are an essential lifeline for children and their families. We must ensure 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, you can really make a difference.
Join here www.butterflychildrencharity.com
Source: DEBRA Butterfly Children’s Charity