the psychological impact of butterfly skin

2024-10-25 06:49:00

On the occasion of International Butterfly Skin Day, October 25, five affected families, together with the DEBRA association, are protagonists of the “Scars” campaign, focusing on the psychological challenges presented by this rare disease.

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butterfly skin scars

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Photograph from the Cicatrices campaign. /Martín Corradini

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Photograph from the Cicatrices campaign. /Martín Corradini

Butterfly skin or epidermolysis bullosa (EB) is a disease rare, genetic and incurable which causes extreme fragility of the skin and what causes it wounds external and internal up to 80% of the body, This is supported by DEBRA, the non-profit organization that launched the “Cicatrices” campaign.

The people who suffer from it, which in Spain exceed 500 peoplethey lack the proteins needed to make their skin stick to the body well and this makes their skin as fragile as a butterfly’s wings, hence the name.

The slightest touch can cause sores and blisters on up to 80% of the bodytherefore daily actions such as walking, dressing or eating can be extremely painful. Therefore they must submit daily treatments for up to 5 hourswho turned the bandages into his second skin.

Scars

The “Cicatrices” campaign seeks to raise public awareness about psychological impact of butterfly skin. Through this initiative, the photographer Martín Corradini portrays the pain, fear, desolation, rejection and uncertainty witnessed by the five families who participate.

“In an illness that involves many wounds, society often focuses only on the physical consequences of butterfly skin, on treatments… But we also want the invisible to be seen, we want those wounds that cannot be seen at first sight to be known and this, sometimes, hurts much more. Wounds that leave their mark until they become ‘Scars’. Hence the title of the campaign and the reason why the NGO DEBRA Piel de Mariposa offers psychological support”, explains Evanina Morcillo Majow, director of this association.

All the images and interviews were shot in a theatre, set in a dark and diaphanous way, where the protagonist families are surrounded by mirrors, suitcases and knotted bandages, “which represent that introspective journey towards themselves, where They face their own reflection, their own fears, those unanswered questions.to those burdens caused by the disease and which are increasingly heavier”, describes Martín Corradini.

The great challenge: the psychological approach

The aim is to raise public awareness of the disease raise funds hire a psychologist who takes care of families. The NGO reports that the public health system does not offer the specialist care they need.

The two psychologists who make up the DEBRA team They serve more than 350 familiesso in addition to asking for more state aid, they have started a fundraising campaign to hire more professionals who can accompany those affected.

“Every time a baby with butterfly skin is born, our nurses and psychologists travel to any point in Spain, within a maximum of 24-48 hours, to give them answers,
take care of them in those moments of fear and uncertainty, and provide training to the center’s team of professionals,” says the director of the NGO.

DEBRA Butterfly skin

DEBRA Piel de Mariposa is a non-profit organization founded in 1993 by the parents of a child affected by Epidermolysis Bullosa (EB) or Butterfly Skin, which aims to improve the quality of life of families affected by this disease nationwide.

The team of nurses, psychologists and social workers that make up the organization is responsible inform, advise and accompany both families affected by epidermolysis bullosa and professionals, in all stages of their lives.

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butterfly skin scars

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Image from the “Cicatrices” campaign./Martín Corradini

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Likewise, DEBRA promotes the funding of research projects in EB, and promotes awareness campaigns to make visible and raise awareness of the difficulties and barriers that people with butterfly skin have to overcome every day.