Butterfly Skin Charity needs urgent help

by Lorraine Williamson
Butterfly Skin Charity

The Butterfly Skin Charity are asking for urgent help to continue to care for people who live with pain and open wounds. The charity needs to recruit 2 nurses and a psychologist to care for families with Butterfly Skin.  They currently have 3 nurses and 2 psychologists to support over 350 families with this rare condition.

On International Butterfly Skin Day the charity launched a fundraising campaign titled “doing our bit”. With this campaign, they are asking everyone to make a donation to raise the €25,500 needed to recruit a nurse.  An hour of care costs €25. The charity is asking for this support to extend the healthcare and mental health support available to families with Butterfly Skin.

The “30 years of care” campaign, involves 8 families and some of the charity’s health care workers. It aims to raise awareness on the importance of personalised, quality care, that improves the quality of life for families.

What is Butterfly Skin?

Butterfly Skin – Epidermolysis bullosa (EB) is a rare, genetic and incurable condition that causes extreme fragility of the skin. Moreover, it causes both internal and external wounds which cover up to 80% of the body.  Furthermore, DEBRA Butterfly Skin is the only support organisation available to families.

Butterfly skin

How can you help?

They currently have 3 nurses, 2 psychologists, 3 social workers and a researcher looking after over 350 families. However, they urgently need two more nurses and a psychologist to guarantee the quality of care for families.  The total cost amounts to €76,500.

The specific aim of the campaign is to raise the amount to cover the cost of a specialist nurse. This is €25,500.  If 1,000 people donate €25 each this initial target would be reached.  When this is achieved, it will notably improve the quality of life for people living with open wounds. Often they have to endure painful treatments which can take up to 5 hours a day.

Click here to find out how you can get involved.

DEBRA is the only such organisation in Spain

“Families urgently need this care.  We are the only organisation supporting families in Spain.  We have so many families, and the team is too small to provide the level of care and support required.  Given that the hospitals and national health service are not able to provide this we are even more important as a support system for families” said Evanina Morcillo Makow, CEO of the charity.

Cogesa Expats

“The charity is committed to providing the best possible level of care and to continue to ensure that as soon as a baby is born with Butterfly Skin, a team is on site within 48hours to care for families and to provide expert advice to doctors and health care professionals in the hospitals”.

Specialist nurses, psychologists and social workers provide ongoing support. This is either in person or remotely to families and there is a 24-hour dedicated helpline available for emergencies.  In the last year they dedicated more than 16,000 hours to supporting families and covered over 62,300 kilometres to offer care and support.

Fighting for their rights

The other key function for the charity is to defend the needs and rights of families.

In the last 30 years they have made significant progress to improve the quality of life for people with EB.  In 2015 an agreement was made so that all the autonomous communities in Spain committed to providing dressings and other medicines free of charge to families, who up until that point had covered the cost themselves. Diagnostic testing is now also available on the national health and the specialist team at the charity includes 49 employees dedicated to helping families “until a cure is found”.

About the Butterfly Children’s Charity

The charity was founded in 1993 by parents of a boy with EB. There is now a team of specialist nurses, psychologists and social workers who help by offering advice and information to both national health service doctors and health care workers whilst acting as a support system for families from the birth of a child to end of life care.  The team are devoted to providing the best possible level of care and support.

About EB

EB is a rare, incurable and genetic disease that is caused by the extreme fragility of the skin.  It currently affects 500 people in Spain.  The skin acts as our first line of defence against the outside world, but in the case of children with EB their skin is as fragile as the wings of a butterfly.  The lightest touch causes blistering and painful open wounds.  Daily bandaging to protect the skin can take up to 5 hours a day and is so painful that morphine is required. This rare condition causes extreme disability and constant pain; the simple acts of eating and walking are often accompanied by severe pain and distress.

More information

 For more information on how you can help, contact María Juárez García by email at comunicacion@debra.es  or by phone on +34 607 051 054 or visit the website.

ASSSA

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