Lucas, the boy with a rare disease who enjoys life as it is

Lucas, an eight-year-old boy with a rare genetic skin condition called Epidermolysis Bullosa, faces daily challenges due to his fragile skin. His parents, Catarina and Francisco Pereira, share their experiences and the impact of the disease on their family life. They emphasize the importance of palliative care in managing Lucas's pain. Despite his condition, Lucas remains cheerful and enjoys playing, although he must be cautious to avoid injuries. A public petition for universal access to the treatment Vyjuvek has gained over 16,000 signatures, highlighting the urgent need for this medication in Portugal. The ongoing Epidermolysis Bullosa Awareness Week aims to raise awareness about the disease and its specific needs.