Published in La Encerrona y Somos Periodismo, along with the support of the National Press Foundation (NPF)
Diagnoses that arrive after years of no answers, a drastic impact on work and economy, and the obligation of migrating to Lima to survive illness. These are some of the main difficulties that people living with rare diseases in different areas of Peru must endure. The “diagnosis odyssey” is a term that describes how hard it is to identify a rare disease due to a lack of specialists and a scarcity of public resources. On average, a patient has to go through seventeen doctors and wait for ten years before reaching a diagnosis in Latin America. These are the stories of these citizens demanding better care from the Peruvian government.
Diagnósticos que llegan después de años sin respuesta, drásticos impactos laborales y económicos, y la obligación de migrar hacia Lima para sobrevivir a la enfermedad. Estas son algunas de las principales dificultades que viven las personas con enfermedades raras en el Perú.
La “Odisea del diagnóstico” es un término que describe lo difícil que es detectar una enfermedad rara por la falta de especialistas y escasez de recursos públicos. En promedio, un paciente tiene que pasar por 17 médicos y esperar 10 años antes de lograr un diagnóstico en América Latina. Estas son las historias de estos ciudadanos que exigen una mejor atención del gobierno peruano.
Valentino, a seven-year-old boy, is a cystic fibrosis patient in the heights of Huancayo, in Junín, where he must be nebulized and receive other medications daily. Peru
Valentino was diagnosed in Lima. “The doctor said ‘your child has fibrosis and there is no solution. He’s going to die.” Peru
Valentino, just like other patients with cystic fibrosis, awaits triple therapy from the Peruvian government. His parents have evaluated migrating abroad so their child can have access to this treatment. Peru
Marki lives in Chepén, La Libertad, and has decided to donate the medication that Sofie used to the association of cystic fibrosis patients in Peru. Her daughter Sofie had spent the first few months of her life with frequent coughing and difficulty gaining weight. Sofie passed away at ten years old on September 28th, 2022 Peru
Marki keeps Sofie’s letters to her, written throughout Sofie’s ten years of life, in which she expressed gratitude to Marki for taking care of her during the time she was a cystic fibrosis patient. Peru
“My joints hurt even when I tried to move my neck. You have no idea of how hard it’s been to receive a diagnosis [ankylosing spondylitis],” Harold explains. Four years ago, however, he started experiencing pain in his joints and lumps started appearing in his knuckles and hips. Doctors did not believe him when he sought medical help. Chiclayo Peru
Harold has fond memories of the trips he made before ankylosing spondylitis, a disease that has led him to rely on a walking stick to move around. Chiclayo Peru
When he was twelve, John received his cystic fibrosis diagnosis, after living his early years with respiratory difficulties and having had incorrect diagnoses, such as asthma, pneumonia and even tuberculosis. During the pandemic, John lost his father. Now, he lives with his mother and siblings in Huancayo, Junín, 10498 feet above sea level. Doctors have already advised moving to Lima to treat his disease. Peru
Due to John's illness and the lack of oxygen derived from the altitude in Junín, his lungs reduced their capacity to 30%. His nails turn purple. Peru
At age 51, José maintains his passion for Alianza Lima and work. He hopes this is the year when he gets a job that matches his needs and, with that income, be able to afford part of his treatment. Peru
A photograph of José as a child when he played soccer. His life underwent a drastic change when he was diagnosed with multiple sclerosis. His medical history indicates the anxiety he experienced shortly after learning of his illness. Peru
Due to his multiple sclerosis, José has had to have his bed brought down to the first floor of his parents’ house, where he practices a series of daily exercises as part of his therapy. Peru
Mathews, 4 years old, was diagnosed with Williams Syndrome in Lima, four hours away from Ica where they live. Mathews’s parents, Almendra and Augusto, both had to quit their jobs at different points in time to take care of his son. Peru
Every day, Mathews’s parents must measure glucose levels in their son’s blood. They have to travel to the capital every two months to pick up his medications. Peru
For the past few years, Alicia has lived in Lima following doctors’ advice. Her disease and a lack of access to high-quality health services don’t allow her to live in her natal city, Ayacucho. Peru
Alicia's mornings in Lima alternate between getting her children ready for school and taking her medications. Peru