Leprosy is the oldest known disease to humanity, but it is also one of the least understood and accepted. Contrary to popular belief, it is also a disease that is very much with us.
To the public at large, leprosy is a largely forgotten disease with many believing it was eliminated or consigned to the bible. But as we enter 2019, official figures say it affects 4 million people, with another 3 million undiagnosed. These figures are accepted to be significantly underestimated. A big part of our work at Lepra is therefore to raise awareness both in the UK and in the wider world that leprosy exists and is still destroying lives.
While we’re not certain exactly how transmission occurs, the myth that a single contact with an infected person can transmit the disease is definitely inaccurate. Prolonged, close contact is required, and it is important to remember that 95% of the population is naturally immune to the disease.
Another myth that can be debunked is that body parts simply fall off. Leprosy attacks the nerves of areas such as arms, feet and eyes that can then lose feeling. Once the disease begins attacking the extremities, injuries caused to them cannot be felt, leading to infection, ulcers and at worst case, amputations. Worryingly, immune reactions to leprosy can be crippling, painful and lead to disability.
Early detection is essential to reduce the numbers of people suffering these debilitating disabilities, yet I’ve found that “active case finding” (i.e., early detection, treatment, disability care and changing the perception of leprosy) is not a priority for many countries. I therefore believe that more investment is needed in this area. At Lepra, we work in India, Bangladesh and Mozambique to find, diagnose and treat people affected by leprosy. If early detection is scaled-up, then numbers of cases may fall. There will thus be far fewer long-term disabilities, and we can reach our vision of leprosy being a disease of little consequence.
Skin smears are an invaluable way to diagnose leprosy and the most reliable way to know which form of the disease a person has. Yet access to lab facilities in remote areas is seldom possible so the skill of diagnosis often rests only on clinical examination. Few have that skill and so many people have misdiagnosis after misdiagnosis meaning the disease can be far advanced before they come to Lepra or to other specialist leprosy organisations.
Our goals for World Leprosy Day 2019 and our 95th year are twofold. Firstly, we’re calling for more investment into research into leprosy, how it is transmitted and can be treated. Last year just $16m was invested into leprosy research. In my opinion, this is something the medical technology industry can change.
Secondly, we want to tackle the prejudice and discrimination that people affected by leprosy face. To do this, we first need to change our own attitudes towards leprosy, how we use the disease and words associated with it, in the media, political arenas and in our day-to-day lives. For example, in 2019, nobody should be called a “leper” or subjected to prejudice or discrimination because of a curable disease. Using leprosy as a cipher for a worst-case scenario, or a negative outcome should not be acceptable. The phrase “social leper” for example perpetuates the stereotype and reinforces the prejudice people affected encounter. People and companies can help by signing our petition and pledging to no longer use the word “leper” or use leprosy as a metaphor or expression of a negative outcome.
In my view, working with leprosy is much more than medical technology and medicine. It’s disability care, self-help, advocacy for basic rights and confronting prejudice.