2023-10-25 08:41:25
October 25 is International Butterfly Skin Day, a disease that causes patients to have wounds and blisters on almost the entire body with the slightest touch. There is no known cure and it affects more than 500 people in Spain.
October 25 is International Butterfly Skin Day. Image courtesy of DEBRA Butterfly Skin
October 25, International Butterfly Skin Day.
In this framework, the NGO DEBRA Butterfly Skin has stressed the importance of raising awareness, informing and researching this disease.
For this reason, they launch a solidarity challenge. They invite you to make a donation through the migranodearena.org platform, in order to cover, at least, the cost of hiring a nurse, who amounts to 25,500 euros.
butterfly skin
Butterfly skin is a rare disease, of genetic origin, degenerative and with no known cure at present. It has more than 500 patients in Spain and causes extreme fragility of the skin that prevents those who suffer from it from leading a normal life.
Patients lack the necessary proteins that make the skin adhere properly to the body. Because of that, it is as fragile as a butterfly’s wings.
The truth is that the slightest touch can cause wounds and blisters on up to 80% of their body, so everyday actions such as walking, dressing or eating can be extremely painful.
As a consequence, they must undergo daily cures of up to 5 hours and wear bandages that cover almost your entire body. That is why you could say that the bandages are your second skin.
October 25 is International Butterfly Skin Day. Image provided by DEBRA and made by Martín Corrales.
Much attention needed
The great impact of the disease translates into a very high need for care.
It is important that families receive the necessary health and psychological care. The association remembers that, sometimes, the resources they have are not enough.
“Every time a baby with butterfly skin is born, they travel within a maximum of 24-48 hours to any point in Spain to care for them in those moments of fear and uncertainty, and
to train the hospital’s professional team, so that they know how to manage the disease,” the association explains.
In addition, the NGO adds that its nurses, psychologists and social workers carry out exhaustive follow-up electronically or in person. Likewise, they have a 24-hour emergency telephone number, to be able to respond urgently.
During the past year, they dedicated more than 16,000 hours to support families and traveled more than 62,300 kilometers to meet their needs.
“Thirty years caring”
DEBRA Butterfly Skin has been caring for patients and seeking funding for butterfly skin research for 30 years.
On the occasion of their thirtieth anniversary, they have decided to launch an initiative called “30 years of caring”. The campaign will consist of the dissemination of a series of videos and photographs featuring eight families with people suffering from the disease. DEBRA professionals also participate.
In these contents they capture the reality of living with butterfly skin and show the importance of having socio-health experts nearby to improve quality of life and provide psychological support.
In addition, they intend to raise funds with the campaign to be able to cover the cost of a nurse so that patients have more resources within their reach.
DEBRA campaign video
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