Adrián Soto, first patient in Spain to receive pioneering treatment for butterfly skin
The young man from Tolox has been treated with Vyjuvek at the Costa del Sol Hospital in Marbella, alongside Leo, a boy from Seville
Monday was a historic day for Andalusian public healthcare. Adrián Soto, a 22-year-old from Tolox, alongside 12-year-old Leo from Seville, has become the first patient suffering from epidermolysis bullosa - better known as butterfly skin - to be treated with the revolutionary drug Vyjuvek. The medication was administered at the Costa del Sol Hospital in Marbella throughout Monday morning.
The President of the Regional Government of Andalusia, Juanma Moreno, stated on X (formerly Twitter) that today is "a great day" as patients have begun receiving this treatment. "I am absolutely delighted for Leo and Adrián, who have been the pioneers in starting their treatment," Moreno indicated, expressing his "pride" in the public health service.
The announcement that the Andalusian Health Service (SAS) would fund this drug was made on 12 March in the Andalusian Parliament. The campaigning by families has been key in ensuring this medicine can "alleviate, heal, and improve" the lives of these children.
Severe lesions and daily struggles
Virginia Cortés, Adrián’s mother, explained that his skin began to blister immediately after birth. Adrián suffers from dystrophic epidermolysis bullosa, the most severe variant of the disease.
In Málaga, there are about a dozen people affected by this specific type.
"This is the variant that damages every layer of the skin, from the most superficial to the hypodermis and dermis... even internal organs and mucous membranes. They have a deficiency of collagen VII, the protein that anchors the layers of skin together. They suffer from a genetic mutation," says Virginia.
The family has endured 22 years of constant battles, wound dressings, and multiple surgeries. Adrián has undergone operations on his hands to prevent his fingers from fusing together, as well as corneal surgeries, as the lesions can lead to blindness. He also faces severe swallowing difficulties, kidney issues, and heart valve lesions.
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"This disease is devastating and cruel," Virginia says. "You have wound after wound. For most people, a wound heals and you forget it; for us, it will inevitably reopen because the skin has a memory."
The primary danger is that these wounds become impossible to close over time, increasing the risk of sepsis or skin cancer (carcinomas).
A breakthrough in gene therapy
Vyjuvek is a topical gene therapy that introduces a functional copy of the gene responsible for collagen VII. Applied weekly, it encourages the progressive closure of the chronic wounds characteristic of the disease.
For Adrián and his mother, this is a "miracle" of science. Until now, there were no treatments - only palliative care, infection control, and wound management.
"This is the variant that damages all the layers of the skin, from the superficial to the hypodermis, including the organs and all the mucous membranes. Those affected have a deficit of collagen VII, the protein that anchors the skin layers to each other," says Virginia Cortés, the patient's mother.
The Costa del Sol Hospital and Adrián Soto have set a legal and medical precedent. Although his condition makes attending university challenging, Adrián is currently studying a joint honours degree in Education at the University of Málaga. For now, his bravery has paved the way for the first real victory against butterfly skin.
