On April 27, a 22-year-old patient from Tolox became the first recipient in Spain of Vyjuvek, a topical gene therapy designed to treat dystrophic epidermolysis bullosa. This medical milestone took place at the Hospital Costa del Sol in Marbella, marking a turning point for those suffering from this severe rare disease.
The young man's mother, a nurse, was able to actively participate in the application of the gel, a deeply emotional moment after years of efforts and demands for the medication to arrive in the country. This treatment, while not a definitive cure, represents a significant improvement in patients' quality of life by allowing wounds to heal and reducing pain.
“"I want to be cured, and this is a first step."
The young man's life has been marked by a daily routine of wound care that can last for several hours, due to the extreme fragility of his skin. The disease not only affects the external skin but also internal mucous membranes, making basic actions like eating or sleeping difficult. The family has converted a room in their home into a small clinic to manage the constant care.
The arrival of Vyjuvek in Spain was the result of an intense campaign initiated in 2023 by the patient's mother, who contacted various institutions and authorities. Finally, the Junta de Andalucía announced the funding of the medication for patients in the autonomous community through an exceptional pathway.
The community of Tolox celebrated this achievement on May 2 with a party in the Plaza Alta, organized by a neighbor who used social media to raise awareness for the cause. This event brought together artists from Malaga and other families affected by the same disease, symbolizing a collective victory and the hope that the treatment will reach all who need it.
