‘Constant danger’: Life after leprosy, a long neglected disease

Dan Izzett has lived with leprosy’s effects on his body for 70 years, and has lost much to what he calls an “ancient, fascinating, very unkind disease”.

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The Zimbabwean pastor and civil engineering technician was diagnosed in 1972 at the age of 25, but he first became ill when he was just five years old.

The bacteria that causes leprosy, Mycobacterium leprae, had a lot of time to spread throughout his body due to the lengthy incubation period.

In 1980, in Harare, the capital of Zimbabwe, his right leg was amputated. Izzett, now 75, has no feeling in 70% of his face, below his knees, or above his elbows.

In a phone call from his residence in southwest England, Izzett told AFP that this lack of feeling presents a “constant danger.”

He claimed that “I put my hands on a hot plate and hadn’t noticed it until I could smell my flesh burning” in October 2020, which resulted in the amputation of his right middle finger.

His left foot’s little toe was removed the following year. He lost another toe last month.

According to Izzett, he made the decision to speak out about his experience because millions of less fortunate survivors were unable to do so because of the disease’s stigma and discrimination.

The “forgotten” patients Hansen’s disease, also known as leprosy, has plagued humanity for at least 4,000 years, frequently affecting the poorest populations.

The World Health Organization views it as a tropical disease that is understudied and understudied in comparison to many other diseases.

The World Health Organization estimates that more than 140,500 new cases will be identified worldwide in 2021, with nearly three quarters of those cases occurring in India, Indonesia, and Brazil.

However, disruptions brought on by the pandemic have resulted in nearly 40% fewer cases being identified annually, raising concerns that tens of thousands have gone undiagnosed.

The official numbers probably did not reflect reality even before the pandemic.

Bertrand Cauchoix, a leprosy specialist at the Raoul Follereau Foundation in France, stated, “We do not count the forgotten, undetected patients.” He added, “We know the number of patients who have been tested.”

This is partially due to the disease’s 20-year incubation period. Additionally, testing and diagnosis take time, and patients run the risk of infecting their families.

“My wife got the disease from me” was what Izzett said before he got the diagnosis.

Izzett received the lifetime treatment of the antibiotic Dapsone in the 1970s.

Multidrug therapy (MDT), which included Dapsone, became available in the middle of the 1980s. Although nerve damage and other signs of the disease remain, it can treat leprosy in 12 months.

After being diagnosed with leprosy in 2010, Mathias Duck, a former chaplain in the capital of Paraguay, Asuncion, only needed six months of MDT.

The 44-year-old told AFP, “I consider myself the luckiest person affected by leprosy because I was diagnosed and treated in time and therefore have no impairments whatsoever.”

Since 2000, Swiss pharmaceutical giant Novartis has donated doses of MDT, which is provided for free by the WHO to patients all over the world.

However, new treatments have not made much progress.

Cauchoix stated, “There is no money for leprosy, only donations to charities.”

Don’t use the “L word” Alexandra Aubry, a specialist at the Centre for Immunology and Infectious Diseases in France, checks to see if any new antibiotics developed for other conditions could also be used to treat leprosy.

Because the leprosy bacteria cannot survive in a petri dish, her laboratory is one of the few in the world that can conduct tests on it.

She stated that they are attempting to “simplify” the treatment so that it can be completed in less than six months.

Several vaccines are also in development, but they are still in the early stages of human testing.

Aubry stated, “It is very complicated to get funding for this.”

She stated, “To assess the effectiveness of a vaccine, you have to follow the vaccinated population for 10 to 15 years,” with the disease’s lengthy incubation period further extending the timeframe.

Leprosy efforts are “a drop in the bucket” in comparison to how quickly the world responded to Covid, Duck stated, calling for significantly more research and political action.

However, he added that for World Leprosy Day on Sunday, everyone can refrain from using the term “leper.”

Duck referred to it as discriminatory, describing it as the “L word.”

He continued, “It’s a small step that the majority of people can do to give people affected by leprosy “the dignity they deserve.”

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