For patients with a rare disease, reaching a diagnosis can be complicated. Many of these conditions still do not have a cure. In the case of Oliviero Toscani, the great photographer who shared his experience with ‘Corriere della Sera’, the diagnosis is amyloidosis, a condition caused by the accumulation of proteins produced by our body, which deposit in vital organs in the form of small fibers, progressively damaging them.
Toscani explained that he began to feel unwell just over a year ago and is receiving an experimental treatment.
“I am living another life. I come from a generation, that of Bob Dylan, where we were forever young; the thought of aging simply didn’t exist. Until the day before this, I was working as if I were 30. Then one morning I woke up and suddenly I was 80,” Toscani, 82, recounted. A year ago, “at the end of June, I woke up with swollen legs; I was in Val d’Orcia. I started to have difficulty walking.” It was a doctor from Pisa, Michele Emdin, a professor of Cardiology at the Sant’Anna School of Advanced Studies in Pisa and director of the Cardiothoracic department of the Monasterio Foundation, who diagnosed him with amyloidosis.
The Numbers
Rare, yes, but how rare? As explained by the Higher Institute of Health, it is estimated that every year in Italy about 800 people are diagnosed with systemic amyloidosis. There are about thirty different types of amyloidosis, each caused by a different protein. Each type of amyloidosis requires a different therapy.
The Effects
The damage to the affected organs is progressive, transitioning from initial reversibility to more severe impairment. Meanwhile, research is ongoing, exploring different avenues. “I am a guinea pig – the photographer stated to the newspaper – in October I also got a viral pneumonia and COVID; they pulled me back by my hair. I think I was even dead for a few minutes: I remember an abstract thing of somewhat psychedelic colors. In a year I lost 40 kilos. I can’t even drink wine anymore: the taste is altered by the medications.”
The Therapy
Currently, as stated on the Higher Institute of Health’s website, there are no available treatments that can directly remove the deposits associated with amyloidosis. The treatment aims to prevent the further production of abnormal light chains and to monitor and treat any issues affecting the affected organs over time. This can give the body enough time to gradually eliminate the deposits before new ones form, thus preventing damage to the organs.
In most cases, chemotherapy is needed to eliminate the abnormal bone marrow cells and prevent them from producing abnormal proteins. If, due to the amyloid deposits, the functioning capacity of an organ is reduced and becomes insufficient, specific treatments are necessary, such as diuretics for heart failure or dialysis in cases of kidney failure.
Toscani and Switzerland
The great photographer also spoke about the end. “I am not afraid. As long as it doesn’t hurt. And I have lived too much and too well; I am very spoiled. I have never had a master, a salary; I have always been free.” “When I told my friend Luciano Benetton that I had a rare disease, he replied: ‘Oliviero, you were born with a rare disease!’.”
And again: “Of course, living like this doesn’t interest me. I need to call my friend Cappato, I have known him since he was a boy. Sometimes I feel like it. I told him once already, and he asked me if I was crazy.” Cappato, treasurer of the Luca Coscioni Association, founder and co-president of Eumans, and a former member of the Italian Radicals, is the promoter of the Legal Euthanasia campaign and has become famous for his battle for assisted suicide after the trial for having accompanied Dj Fabo to Switzerland.
At the Museum für Gestaltung in Zurich, there is an exhibition of Toscani: “It has broken all records: it was supposed to end in mid-September, and instead, they are extending it until the end of the year. To think that I used to walk past it when I was a student, admiring those who managed to exhibit there. And now it’s me. I haven’t gone yet. Maybe when he returns, Ali will take me. And then maybe I will continue the journey with Cappato. That would be very funny.”