In the UK, when you're sick you go to the doctor and expect a swift and accurate diagnosis. It is rare to be told that your symptoms are unheard of or to be given a completely incorrect diagnosis. In many countries though, this is commonplace, especially when it comes to lesser known diseases like leprosy and lymphatic filariasis.
In fact, our research shows that a third (34%) of people affected by leprosy have been to three or more doctors before they reach us, at Lepra, and get the correct diagnosis.
In our Adilabad project in India, we work with indigenous communities and the percentage of misdiagnosis there reaches a shocking 54%. Even in the UK only 37% of people are aware leprosy is still an active illness. While the disease is no longer prevalent in the UK, this lack of awareness means that people affected by leprosy are overlooked by charitable givers. We need this to change so we can continue raising awareness and finding those who have been or could be misdiagnosed.
Obviously no case of incorrect diagnosis is good but, in the case of leprosy, those added months without treatment could mean a life with a permanent disability. Those three visits to the doctor, for those not fortunate enough to have a national health service, also mean money. It means fighting to fund a potentially incorrect treatment, giving up work or education to do so and becoming a burden to your family, not to mention the emotional and mental cost caused.
Leprosy is curable and there is no need for anyone to live with the potential debilitating effects of nerve damage and disability, but unfortunately it happens because too few people are aware of the symptoms. Often individuals are also too afraid to come forward because of the stigma leprosy carries.
That is why the acknowledgement of neglected tropical diseases in the global goals and among the international development community is so important. It is totally unacceptable that people are living in misery with an easily diagnosed, completely curable disease because of a lack of funding and an unfounded stigma.
Fortunately, our work in areas of India, Bangladesh and Mozambique is enabling us to find more people living with neglected diseases. We are able to provide access to treatment as well as helping individuals in other aspects of their life such as maintaining an income and integrating into society. Our figures show personal income goes up 17% after someone with leprosy has come to us.
At Lepra, we are heavily invested in providing public health campaigns as well as government staff training. We also train private practitioners and traditional healers as people often seek help with them first. Both of these actions educate children, women and men on the symptoms of various diseases including leprosy and lymphatic filariasis. This increased awareness should mean that symptoms are recognised and treatment accessed earlier.
As well as the standard approaches, at Lepra, we are also training female community champions to go out into remote villages and talk to people about their health. They are actively looking for people who may need our help. This face-to-face contact with a person who may also have experience enduring a neglected disease helps in dispelling the stigma that leprosy is a curse.
If we can rid the world of such a myth then perhaps the numbers of misdiagnosis will start to fall, and with them, the severe and debilitating consequences. After all, in the twenty first century, shouldn't we all have the privilege of visiting the doctor in the confidence we'll get the advice and care we need?