The articles written by the PÚBLICO Brasil team are written in the variant of the Portuguese language used in Brazil.
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Amyloidosis is a serious, rare, incurable disease that is unknown to many doctors. To diagnose the disease, in time to save the patient’s life, is a true marathon that involves knowledge and a lot of persistence. There are more than 40 subtypes of amyloidosis, but the most serious variation is called AL, which can lead, in a very short time, to the failure of vital organs such as the kidneys and heart.
Imagine your body as a large factory where there are several workers (cells) responsible for producing important products (proteins). Some of these workers, called plasma cells, have a very important function: producing proteins known as antibodies, capable of protecting the factory from all types of fires and accidents (infections).
But one day, something goes wrong. Plasma cells lose control of their tasks and begin to produce deformed and defective proteins, which in turn begin to clump together, forming amyloid deposits that travel throughout the structure of the factory from its control center, the bone marrow, until they accumulate in organs vital to the functioning of the site, that is, nerves, kidneys, gastrointestinal system and heart.
When this phenomenon happens, we call it AL amyloidosis. As a result, our factory “goes into a tailspin” and, if the heart is the affected organ, severe heart failure develops. When AL amyloidosis occurs secondary to the diagnosis of a rare blood cancer, multiple myeloma, we are faced with the rarest and worst prognosis of the disease, according to science. In this scenario of fear and insecurity, our factory could literally “close its doors” in just six months (prognosis)!
This analogy to describe such a complex picture of a rare disease is my reality, as a survivor of multiple myeloma and AL amyloidosis. However, my factory remains open after a long journey that began with seven months of chemotherapy, an autologous bone marrow transplant and almost a heart transplant.
But, today, the focus is not on my life story and overcoming living with two rare, serious and incurable diseases. I want to use my voice to represent many patients in the world who suffer from amyloidosis, a disease that, despite not being cancer, has no cure, is extremely malignant, unknown to medicine and, for this reason, there are very few clinical studies to find the answer. your definitive cure.
Today, October 26, 2024, advocates, caregivers, healthcare professionals, scientists and patients are involved in a movement to draw attention to World Amyloidosis Day, a journey dedicated to remembering the suffering of the many patients who all fall ill and die. years due to this disease. But more than that, we want to talk about the hope of a cure, which will only come when the disease gains the visibility it deserves, because if the world continues to be unaware of amyloidosis, there will be no greater incentives for research and the development of clinical trials.
The date was created by the Amyloidosis Alliance and patient organizations from 18 different countries, spanning four continents, to alert the world to the delay in diagnosis that patients face, which is on average four years. Faster diagnosis and treatment will change and save many lives. Join us in this connection of love!
Jumara Nascimento is a Brazilian journalist and was diagnosed with multiple myeloma and cardiac AL amyloidosis, the most serious and deadly form of the disease, four months after arriving in Portugal as an immigrant. Today, he is a patient advocate for Myeloma Patient Europe (MPE), an organization that provides informational support to patients and caregivers across Europe. She became an activist for the cause by doing voluntary work promoting multiple myeloma and AL amyloidosis on Instagram to help patients, caregivers and healthcare professionals in Brazil and Portugal.
Instagram: @jumaranascimento_oficial
