Adrià, a superhero with butterfly skin

  • The NGO Debra launches a campaign to raise funds

  • This pathology affects about 500 people in Spain

This Monday is the international butterfly skin day. For this reason, the NGO Debra Piel de Mariposa has launched the campaign ‘Put yourself in his skin’, a report that shows the day-to-day life of Adrià, “a noble, happy and fun superhero”.

The butterfly skin or epidermolysis bullosa It is a genetic disease that affects some 500 people throughout the Spanish territory and, for the time being, has no cure.

The proteins that make it possible for the skin to have resistance are absent or do not work properly in people with butterfly skin. This causes wounds or blisters with the slightest touch.

The people live with pain, not only on the skin, but also on the internal parts of the body, since any friction caused by a piece of food can cause wounds in the mouth or esophagus.

‘Put yourself in their shoes’

Adrià is a 5-year-old boy from Cardedeu (Barcelona), very vital, noble and fun who loves superheroes, playing football, cards, and playing the drums. Adrià has the same tastes and concerns as any child his age. But there is a difference: he has butterfly skin.

The report shows her day-to-day at home, in the park, at school and how she needs a caregiver to carry out some actions and the assiduous task of changing bandages and dressings that cover your body.

Also included Testimonials from Debra’s family and professionals that explain that at the muscular and bone level there can be complications from the disease, in the eyes, mouth and esophagus, among others. In addition, the butterfly skin hinders actions as simple as eating, walking, or hugging, which can be extremely painful for him. Adrià’s skin care costs €1,000 each month and takes up three hours of the family’s day.

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Debra’s role

Debra Piel de Mariposa was founded in 1993 by Nieves Montero and Íñigo de Ibarrondo, when their first child was born with the disease. The lack of knowledge and uncertainty of them and the professionals who attended them led them to create a point of reference for others.

Although butterfly skin is a genetic disease, it is not detected with ultrasound, the pregnancy develops normally and is observed once the baby has already been born. For this reason, the NGO, apart from being support and guide for the family, also offers information to the professionals of the hospital centers.

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The diagnosis causes psychological impact in the family. The psychologist Nora García explains in the report that “one of the first psychological impacts when this disease occurs is the loss of illusion and joy that brings a person into the world.”

Research

Despite the help offered by the entity, Adrià’s parents need more support from public institutions, which only invest 1.2% of GDP in research. Debra’s researcher, Núria Tarrats, also calls for efforts to find a cure or treatment for butterfly skin.

There are Debra Associations in many countries of the world, which are part of the Debra International network, a fact that allows them to have information on the status of international investigations.

Although the initial objective of the union between the Debra associations was research, they have also realized the importance of improving the quality of life of families affected by the disease.

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