Maria Paula Vieira was 3 years old when her hands began to burn, and the pain eventually became part of her life.
For nearly three decades, she went to dermatologists and hospitals and underwent tests and treatments without getting an answer. Physiotherapy even made her condition worse, and over time, skin problems on her hands and feet severely affected her mobility.
The answer came in an unexpected way: Tinder. Before the pandemic, she matched with Lucas, then a medical student, and they eventually became friends. When she told him her story, he remembered a class on the skin manifestations of systemic diseases and decided to investigate her case. He found medical publications about patients with similar symptoms and connected her with dermatologist Paulo Criado.
On December 19, 2023, a genetic test confirmed that she had Olmsted syndrome associated with primary erythromelalgia, a rare genetic disease. After nearly 30 years without a diagnosis, she was finally able to begin appropriate treatment.
Today, at 33, she exercises, travels, and shares her story. In Brazil, the average time to obtain a diagnosis of a rare disease is 5.4 years, while her search lasted nearly three decades.