Very rarely do you end up speaking to complete strangers on the tube let alone having a spontaneous book club. However, this is exactly what happened to me last week. I was fully engrossed in my book, The Island by Victoria Hislop, when a lady sat down opposite me and exclaimed, “Oh that is such good book, but it is so sad”. The book is about a small Greek island called Spinalonga. Until the late 1950’s, it was an island where people who contracted leprosy in Greece were sent to live.
My immediate thought was, “What, they don’t find a cure for leprosy?” What she was probably referring to was the family tragedy, which was the main focus of the story – my scientific curiosity had taken over when reading this book.
My knowledge of leprosy before reading this book was limited; I knew it was passed on by close contact; it caused skin deformities and featured very heavily in the Old Testament (Religious Education GCSE exam flashback). I had no idea how this disease was currently treated and thought it had been eradicated along with small pox.
I was ashamed by my lack of knowledge, so I did a bit of research…
Leprosy key facts:
- Caused by bacteria (Mycobacterium leprae)
- Symptoms can take years to appear (because the bacteria grows slowly) and predominantly effects the nerves and skin
- Transmitted by those who are infected with M. leprae via droplets from the nose and mouth
- Treated with multi-drug therapy (MDT), consisting of three antibacterial drugs: dapsone, rifampicin, and clofazimine. To date, there has been no resistance seen to MDT
The disease is, in many areas of the world, on its way to being eradicated due to MDT. According to WHO, leprosy has been eliminated from 119 countries out of 122 countries where the disease was considered as a public health problem in 1985. This is because MDT was first provided free of charge by the Nippon Foundation, a Japanese drug fund, and then through drug donation from Novartis, the main MDT manufacturers.
Leprosy is, however, still a big problem in many areas of the world including Brazil and India. There is still a certain stigma surrounding leprosy, which stems from historic prejudices – the first known written mention of leprosy is dated 600 BC.
It is not seen as a high profile, disease of poverty, like HIV or tuberculosis even though it has been around for thousands of years longer (HIV was only discovered in the 1980’s). We seem to be making headway in breaking the stigma surrounding HIV, but I don’t think the same can be said for leprosy. And it is the stigma attached to it that, according to the WHO, is stopping people self-reporting and coming forward to be treated. Attitudes and behaviour towards leprosy need to change at both global and local levels because if the disease is treated early, it can be cured. I think leprosy needs one mighty global disease awareness campaign!
The book provided a completely different perspective on a very destructive disease. The characters may have been fictional and the treatment issues just an underlying subplot, but for me it totally broke the stigma surrounding leprosy.