Malaga: young man becomes first in Spain to receive gene therapy for 'butterfly skin'

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Adrián Soto's mum describes the arrival of the Vyjuvek drug as a "miracle" for patients with the most severe type of epidermolysis bullosa

José Antonio Sau

Wednesday, 22 April 2026, 11:21

When Adrián Soto was born 22 years ago, his mother Virginia Cortés noticed that, as soon as she would touch him, "lesions would appear" on his skin. After his birth via a C-section, the doctors took him to the neonatal unit where they kept him isolated. "After ten days, we decided he should come, home because we preferred to be with him, and well, we started bandaging and treating his wounds," Virginia tells SUR.

Adrián suffers from a rare genetic disease called epidermolysis bullosa (EB), also known as 'butterfly skin'. He has the most severe variant - the dystrophic form. In mid-March, the Andalusian regional government announced that it would fund adopting an ambitious drug called Vyjuvek, which will bring significant benefits to the 45 Andalusian patients with the most severe subtype of the disease.

Adrián will be the first person from Malaga to receive it and, almost certainly, he will also become a pioneer in Spain, because his case is precisely the one that has made the regional ministry of health agree to pay for it.

"Healthcare professionals are currently undergoing training, as they need to learn how to handle, prepare and administer the drug. It will be very soon, but the days feel like years," Virginia says.

Adrían and his family live in Tolox, but the young man has always received treatment at the Costa del Sol hospital in Marbella. "They are the ones who opened the door for Vyjuvek to arrive in Spain and be dispensed in the public health system. They were the first to follow all the scientific evidence and publications as they came out. In fact, the dermatologists and the whole team kept telling us: 'This is promising, it's fantastic, we have to get it.'"

A 22-year struggle

"We've been battling this for 22 years, dealing with treatments and countless surgeries. Adrián has had multiple surgeries on his hands to prevent stumps from becoming stumps and fusing together. He's also had corneal surgery, as the injuries left him blind. Even his eyelashes, when they brush against his cornea, cause a wound and an incredibly painful ulcer. He also has severe difficulty swallowing. He can't eat anything, only very clear liquids and in small sips. He has damage to his heart valves and his kidney. It's a very tough illness and we've managed it as best we can," Virginia says.

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