I’m re-using this interview as the challenges of Leprosy continue to be little-known. Originally published on my old blog.
Today I’m excited to be hosting a blog interview with Hannah, a Twitter friend who works for an important charity. Rather than ramble on, lets get straight to it!
1) Hi! Who are you and what do you do?
I’m Hannah Mudge and I’m the Digital Communications Officer at The Leprosy Mission England and Wales, a Christian development organisation. As a charity we are part of the wider global fellowship of The Leprosy Mission and have been working to transform the lives of people affected by leprosy for 140 years. The Leprosy Mission England and Wales works in 11 countries: Bangladesh, Ethiopia, India, Mozambique, Myanmar, Nepal, Niger, Nigeria, South Sudan, Sri Lanka and Sudan. We work on four key areas of development: healthcare, housing and sanitation, education, training and livelihoods, and advocacy.
2) What should we know about Leprosy?
Firstly, that it’s still around today! A lot of people know of leprosy because they know it’s mentioned in the Bible, or they’ve heard about medieval leprosy hospitals in Britain. What’s not so widely known, however, is that it hasn’t been eradicated and that 232,857 people were newly diagnosed with the disease in 2012. Over half of these new cases (134,752) were found in India, with Brazil and Indonesia having the second and third highest numbers of new diagnoses (Source: WHO, August 2013)
Secondly, it’s really important that people understand what actually happens to the body of someone affected by leprosy, because there’s a lot of misinformation around. Leprosy is a mildly infectious disease caused by bacteria that’s related to tuberculosis. The bacteria multiplies really slowly, which means that symptoms of the disease can take decades to appear in someone affected. It starts by damaging the small nerves in the skin’s surface, which can result in discoloured patches of skin with no feeling.
If left untreated, leprosy then goes on to damage the large nerves in the elbows, wrists, knees and ankles. This can lead to loss of sensation in the hands and feet, meaning that affected people can no longer feel pain and are liable to injure themselves more easily. Unhealed injuries and infections can lead to the shortening and deterioration of fingers and toes and ultimately, amputation may be needed. Leprosy can also damage nerves in the face causing the eyelid muscles to stop working, which can lead to blindness.
Thirdly, it’s important to know that leprosy is curable, with a course of treatment called multidrug therapy (launched in the early 1980s). This has had an enormous impact on the number of cases of the disease, but curing someone of leprosy cannot reverse the disabilities they may have developed as a result of late treatment. The fear of being diagnosed with leprosy and the stigma people face as a result stops many people from seeking treatment until they have developed visible and lasting disability. Some of these disabilities – such as a clawed hand or eyelids that cannot close – can be treated with surgery and rehabilitation in some countries, but often, people affected by leprosy see their mobility severely impacted.
3) Can you give an example of the non-medical problems people with leprosy face?
Absolutely – there are many. The inclusion of people with disabilities in society is an enormous issue worldwide. People with mobility issues face many challenges in their day-to-day lives – getting around, carrying out household tasks – and in many of the countries in which we work, products and items that can help with this are not readily available or affordable (this is something we can help people with). Leprosy is also one of the world’s most stigmatising diseases. It’s commonly seen as a curse or a punishment for something done in a past life or by ancestors. We know that people affected by leprosy were seen as ‘unclean’ in Biblical times, but this stigma still persists today. It’s only in the last few decades that many countries have stopped confining leprosy patients to institutions or colonies.
Stigma today manifests in many ways. It might mean that a person is thrown out of the family home and shunned by relatives, or indeed their entire community. It might mean that a child is told by a teacher that he or she can no longer go to school. It might mean that people refuse to buy goods from a person affected by leprosy. Leprosy can present barriers to education and employment, but also marriage and family life. In India, leprosy is grounds for divorce (Hindu Marriage Act, 1955; Dissolution of Muslim Marriage Act, 1939; Indian Christian Marriage Act, 1872; Indian Divorce Act, 1869). Stigma is one of the key things The Leprosy Mission hopes to end, through education and rights awareness training.
4) How many people are affected by leprosy worldwide, and in the UK?
The last case of indigenous leprosy in the UK was diagnosed in 1798, but a handful of cases are diagnosed here each year. These cases are usually non-British citizens, but are also occasionally British citizens who have contracted the disease while working abroad. There were 232,857 new diagnoses in 2012, but of course it’s difficult to say how many people are not included in this figure because they did not present for treatment. Globally, around three million people are living with permanent disability as a result of leprosy.
5) How can we help spread awareness of leprosy?
We can all help spread awareness by combating misinformation. Many people still believe that leprosy makes limbs drop off (it doesn’t) and use the word ‘leper’ in a derogatory way (people affected by leprosy find this deeply offensive). For World Leprosy Day this year we’ve produced some resources that we’re hoping people will use to educate themselves and others about the reality of living with leprosy. Share our graphics about leprosy and watch this new video, which explains just how leprosy affects people’s lives. If you follow The Leprosy Mission on Facebook or Twitter you’ll find that we often post news and research related to leprosy that it’s great to share.
In standing with those affected by leprosy and raising awareness about their many needs – physical, mental, social and spiritual – we can follow the example of Jesus, who reached out to the needy and the marginalised. You can partner with The Leprosy Mission in many ways, starting with prayer.
6) Thanks – where can I read more?
The Leprosy Mission’s website has plenty of news, information and ways to get involved.