Oliviero Toscani, the famous Italian photographer, has recently shared dramatic news about his health. At the age of 82, Toscani revealed that he is suffering from amyloidosis, a rare and incurable disease that affects the body’s tissues. “Basically, proteins deposit on certain vital points and block the body. And you die. There is no cure”, Toscani explained in an interview with Corriere della Sera.
Amyloidosis is a pathological condition characterized by the accumulation of abnormal proteins, known as amyloid proteins, in body tissues. Normally soluble, these proteins misfold, becoming insoluble and forming deposits that can severely compromise the functionality of the affected organs. The AIL (Italian Association against Leukemias, Lymphomas, and Myeloma) describes amyloidosis as a disease that can affect various organs, including the heart, kidneys, liver, and nervous system.
AL amyloidosis, the most common form, affects about one in every 100,000 people, according to Orphanet, the international network dedicated to rare diseases. The symptoms of amyloidosis vary based on the organs involved and can include weight loss, heart problems, gastrointestinal difficulties, and kidney failure. Some characteristic signs, such as tongue enlargement or unusual bleeding around the eyes, may guide doctors toward the correct diagnosis, which requires specific tests such as blood and urine analyses and a tissue biopsy.
Currently, there is no definitive cure for amyloidosis, but there are treatments aimed at slowing its progression. Chemotherapy, also used for multiple myeloma, is one of the most common therapies. Additionally, in some cases, stem cell transplantation may be considered, although cardiac damage can limit the patient’s eligibility for this procedure. “Eligibility for autologous stem cell transplantation is strongly influenced by cardiac damage”, explains the AIL.
However, the latest research is opening new avenues for the treatment of this complex disease. Monoclonal anti-CD38 antibodies, such as daratumumab, are showing promising results in the treatment of amyloidosis. “The advent of monoclonal antibodies has provided new therapeutic possibilities”, reports the AIL.
Oliviero Toscani has chosen to publicly share his battle, bringing attention to a little-known but extremely serious disease. His efforts to raise public awareness can contribute to greater awareness and, hopefully, further advances in the search for effective treatments.