28th of February 2022: International Rare Diseases Day

The Butterfly Children Charity urges the government to provide more resources for hospitals specialising in this condition.

Delay in receiving care and treatment for complications such as infections, retractions of fingers and toes and carcinomas has serious consequences for patients.

The health care team from the charity is currently covering in national health hospitals for services not provided for by the national heath service.

There are currently only two national reference centres for Butterfly Skin, at the La Paz Hospital in Madrid and the St Joan de Deu in Barcelona.

Butterfly Skin is a rare, genetic and incurable condition, causing extreme fragility of the skin, leading to both external and internal wounds covering up to 80% of the body.  DEBRA is the only national organisation offering support to families in Spain.

The charity are urging the government to provide better resources to hospitals specialising in Epidermolysis bullosa (EB) or Butterfly Skin: a rare, generative and incurable disease that causes the skin to be as fragile as a butterfly wing and affects over 500 people in Spain.  The lightest touch causes painful open wounds and the entire body requires daily bandaging and painful wound care treatment that can take up to 4 hours.

There are currently only two reference centres for Butterfly Skin in Spain. The La Paz Hospital in Madrid and the St Joan de Deu in Barcelona where patients are looked after by different departments from dermatology, surgery, nutrition, rehabilitation and pain management units.

However, as stated by the charity “we require more human resources, at least two more nurses and a dermatologist at the La Paz Hospital to guarantee the on-going treatment and care needed for patients.  For 10 years DEBRA has been providing nurses and mental health care professionals for the hospitals and these need to be covered by the National Health Service”

With just 3 more people “ they could prevent and delay the effects of the condition, like the retractions, musculoskeletal disorders and focus on early diagnosis when it comes to carcinomas and wound infections, these are complications which can result in death for patients with EB”

Time in hand. With you for a lifetime

In light of this situation, DEBRA has joined forces with FEDER (Spanish Federation for Rare diseases) and their campaign “Make time work in our favour” to raise awareness and underline the lack of resources and funding, but also to face the challenges that arise as a consequence of delays and the lack of diagnosis available to patients.

Parallel to this and to celebrate International Rare Diseases Day, DEBRA will show over a period of weeks on social media a series of videos “With you for a lifetime”.  These videos show 8 families with Butterfly Skin, underlining the chronic and degenerative side of this condition along with the many barriers they have to face during every stage of their lives.

About the Butterfly Children’s Charity

The charity, founded in 1993 by parents of a boy with EB, is the only organisation in Spain that supports children and their families.  The organisation works to improve the quality of life for families.

The team of specialist nurses, psychologists and social workers 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.

Specialist nurses are dispatched to be with families within 48 hours of the birth of a child with EB:  supporting families in moments of fear and isolation as they come to terms with this new reality.

DEBRA co-finances research projects and raises awareness for the disease to ensure that people have a better understanding of what it is really like to live with this condition and the many barriers families face every day of their lives.

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 a butterflies wing.  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.

Contact 

María Juárez García, Marketing and Fundraising, DEBRA Piel de Mariposa

Email: comunicacion@debra.es

Phone: +34 607 051 054

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