"I cannot force anyone to think about my death"

The trip three years ago to Mexico was supposed to be about getting to know another way of understanding death, but it didn't end up going as Nina Roma expected. While mother and daughter happily strolled among the graves, the father and brother wanted to leave because they weren't prepared to think about death. "I can't force anyone to think about death, let alone mine." Such is the forceful statement of poet and speaker Nina Roma (Sant Cugat del Vallès, 1991), who was born with epidermolysis bullosa, a genetic disease popularly known as butterfly skin that causes extreme skin fragility, and a simple bump or friction can cause wounds or blisters. It is a rare and incurable minority disease that affects about sixty people in Catalonia and just over 500 in Spain.

Nina describes herself as a person who has "the opportunity to live" and who does her best to live the best way she can with what she has available. Naturally, she has a "quite intense" bond with her skin, but she is "exhausted" by the discourses of "battle and war" against diseases. "I can't be fighting against my skin. It's allowing me to live too," she says. Although as a child she found it harder to understand, now she can affirm that she loves her skin: "If you don't love your skin, which is part of yourself, what are you doing?"

Every morning she spends between one and two and a half hours on her treatments. Having butterfly skin means dedicating many hours to caring for it. Currently, a 12-year-old boy from Seville, Leo, who also has butterfly skin, is receiving an innovative treatment. It is called Vyjuvek and it is the first time it has been administered in Spain. However, Roma points out that it is not a cure, but a therapy that can help wounds to heal better, reduce their reappearance in the short term, and decrease pain and the time dedicated to treatments.

Although Nina's schedules are different from those of other people and she dedicates a lot of time to self-care, she assures that she manages to do everything. She studied design, completed two postgraduate degrees in illustration, studied English in Oxford, England, and a higher vocational training course in marketing that allowed her to do a five-month Erasmus in Holland, the Netherlands. This February she traveled alone to Morocco, where she stayed for five days and even managed to do a desert route with the help of a guide. All in all, the Sant Cugat native states that her "most authentic self" is traveling alone and discovering the world. "The fact of being dependent makes me long for independence," she admits.

This year she found out she is the oldest person with her type of butterfly skin condition in Catalonia, known as recessive dystrophic epidermolysis bullosa, but she warns that it's information she didn't need to know. "I have always lived in voluntary innocence because not knowing helps me," she says. In fact, Roma recalls that she recently lost faith and hope in everything and insists that it "is necessary" because it makes you "see reality".

This year, together with her brother, her cousin, and Marta Bustos, she launched the podcast "Discopacitades", a space where disability ceases to be taboo, always from a humorous perspective. Nina Roma criticizes that people who talk about disability are precisely those who do not have any: "It's absurd." And it is from here that the idea for the project arises. Furthermore, she also writes poetry because it allows her to express everything she keeps silent and feels, gives motivational talks, and is part of Cia Nostra, a poetry, theater, and music company.

Roma thought a lot about where to go for her summer vacation trip. It was the last one before starting dialysis, which she coincidentally began this Tuesday because her illness, in the long term, also affects her kidneys. Finally, she chose the coast of Sorrento, in Italy. It always does her good to "be able to return to a place where you know you are well." In fact, when she thinks about moments that bring her peace, she explains that one thing she often does is go to watch the sunrise by the sea. She confesses that she likes to go to the beach alone and watch the sun rise while having milk with cookies: "It's my moment, and no one will ever take that away from me."