- 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 the International Rare Diseases day, 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.
On International Rare Diseases day (Sunday the 28th of February) DEBRA joined the Symptoms of Hope campaign, along with FEDER (the Spanish Federation for rare diseases) to raise awareness for patients with EB who are facing a care crisis as a consequence of the pandemic.
The pandemic has shown the need for the EERR (a national network of charities dedicated to supporting patients with rare diseases) to step in and ensure that patients on the vulnerable list are cared for at a time when the efforts of the National Health Service are focused on looking after patients with Coronavirus.
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.
“We must unite in our efforts to be able to continue to offer 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 and we hope that 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 has revised its methods to ensure that families continue to find the support they need: they now offer medical support on a 24hr advice line and have launched a series of webinars to help with guidance and training on the 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 global pandemic DEBRA is now facing a devastating financial crisis. Despite salary cuts and reduced spending the charity lost over 80% 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.butterflychildrencharity.com you can really make a difference.