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Dan Izzet has lived with the physical effects of leprosy for 70 years.
A former Zimbabwean civil engineer and pastor, he was diagnosed in 1972 at the age of 25, but first contracted the disease when he was five.
Its long incubation period gave the bacteria that causes leprosy, Mycobacterium lepra, plenty of time to spread through his body.
In 1980, his right leg was amputated in Harare, the capital of Zimbabwe. Izzet, now 75, is numb above his elbows, below his knees, and 70% of his face.
Izzet told AFP by phone from his home in the southwest of England.
In October 2020, “I put my hand on the hotplate and didn’t realize it until I smelled burning meat,” he said, leading to the amputation of the middle finger of his right hand.
The following year, the little toe on his left foot was amputated. Last month he lost another toe.
Izzet said he chose to speak openly about his experience because the stigma and discrimination that still surrounds the disease prevented millions of less-wealthy survivors from speaking out.
– “Forgotten” Patients –
Leprosy, also known as leprosy, has plagued humanity for at least 4,000 years.
It is considered a neglected tropical disease by the World Health Organization and is the least studied and least discussed disease compared to many other diseases.
According to WHO, more than 140,500 new cases will be detected worldwide in 2021, with nearly three-quarters of them in Brazil, India and Indonesia.
However, pandemic-related disruptions have led to a nearly 40% drop in annual detected cases, with fears that tens of thousands remain undiagnosed.
Even before the pandemic, official numbers may not have reflected reality.
Bertrand Cauchois, a leprosy expert at France’s Raoul Follereau Foundation, said: “We know how many patients have been tested, but we don’t count the forgotten, undetected cases.
This is because the latent period of the disease can last up to 20 years. Testing and diagnosis also take time, during which the patient may infect family members.
Before being diagnosed, Izzet said, “My wife got sick from me.”
In the 1970s, Izzet was put on the antibiotic Dapsone, a lifelong treatment.
In the mid-80s, drug combinations including dapsone became available, known as multidrug therapy (MDT). Leprosy can be cured after 12 months, although nerve damage and other scars of leprosy remain.
Matias Duck, a pastor in Paraguay’s capital Asuncion, needed only six months of MDT after being diagnosed with leprosy in 2010.
Among the leprosy patients, I was the luckiest because I was diagnosed and treated in time and had no problems.”
WHO provides free MDT to patients worldwide, and Swiss pharmaceutical giant Novartis has donated doses since 2000.
However, little progress has been made in new treatments.
“There is no money for leprosy, only charitable donations,” Khoshwa said.
– Do not use the “L word” –
Alexandra Aubry, an expert at the French Center for Immunology and Infectious Diseases, is assessing whether all new antibiotics developed for other diseases can also be used for leprosy.
Her lab is one of the few in the world capable of testing for leprosy, which cannot survive in petri dishes.
She said they are trying to find ways to “simplify” treatment so that it takes less than six months.
There are also several vaccines in development, but they are still in the early stages of human testing.
“Funding for this is very complicated,” said Aubry.
“To assess vaccine efficacy, we need to follow the vaccinated population for 10 to 15 years,” but the long incubation period of the disease makes that period even longer, she said. Stated.
Compared to how quickly the world has responded to Covid, the leprosy effort is a ‘drop in the bucket’ and calls for far more research and political action.
But he added that everyone can do something for World Leprosy Day on Sunday. It is to stop using the term “leprosy patient”.
“We call it the ‘L word,'” Duck said, explaining it was discriminatory.
“It’s a small step that most people can take to give people affected by leprosy the dignity they deserve.”
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