Did you know that some leprosy cases can be incredibly complicated to treat? These patients require a high level of care, sometimes for many years. To find out more about how these complex cases are treated, we interviewed Dr Suwash Baral, a dermatologist who works full-time in the field of leprosy and a TLM doctor based at Anandaban Hospital, the top leprosy referral centre in Nepal, a country with only 150 dermatologists and only three or four full-time leprologists for a population of nearly 30 million
I was awarded a scholarship to attend medical school. During my dermatology studies, as part of the curriculum, I visited Anandaban Hospital (about five years ago). Since then I have developed a connection to leprosy patients. It is one of the most neglected diseases.
Working in the field of leprosy, doesn’t have the glamour of something like cosmetic dermatology. It is less well paid so not many people are interested in pursuing a career in it. But I have always been interested in leprosy so the two weeks of exposure at Anandaban Hospital made me want to work here.
Straight after finishing my studies I came to Anandaban to work and I’ve been here for four years now. In these four years I have learned a lot about leprosy: not only the science but also the social dynamics of the disease which made me more interested in it. Now, every day after work I feel good because of the work I’m doing – this is the biggest motivation for me.
Working in the field of leprosy is a tough job. Every day we see challenging and complicated cases, and these are increasing. Other clinics and hospitals in Nepal are not equipped with resources to help as much as Anandaban hospital is.
Reaction cases are difficult to manage. Just catching cases early is not the only important thing. Due to the potential for leprosy reaction, specialised care is essential. Nowhere else in Nepal can deal with complicated reaction cases and reconstructive surgery of deformity. If these cases are not managed properly, patients may die or develop permanent disabilities. Patients require long-term treatment. They need close observation and hospital care which is why it’s important to have trained and equipped centres like Anandaban.
Besides my hospital work, I attend satellite clinics in the endemic areas to diagnose and confirm the leprosy cases as many cases are misdiagnosed by other health professionals. My role is vital in managing these cases. Patients are more likely to develop disability if they are not treated well.
There are side effects to multi-drug therapy (which is made up of three drugs, dapsone, rifampicin, and clofazimine), such as allergies. Two out of every 100 people will develop an allergy to dapsone. One in every five people who develop an allergy could die from it. Very few hospitals in Nepal can offer treatment for this; expert care is available at Anandaban Hospital. Clofazimine can cause skin pigmentation so the patient may stop taking the drug. Their skin could turn black or dark brown in colour.
One of the big challenges for us is that there are so few dermatologists who have a special interest in leprosy in Nepal. One complicated case with disability can be a lifelong project, and a reaction patient can need treatment for seven to eight years. About 20-30 per cent of new cases experience reaction (periods of inflammation, caused by the body’s immune system attacking the leprosy bacteria, that can affect the nerves) which needs extra treatment. Most need in-patient care and between one and four months of steroid treatment, which is why availability of hospital beds at Anandaban is so important. Management of leprosy reaction is another challenge; it relies solely on oral steroids which has lots of side effects like diabetes, hypertension, osteoporosis and cataracts. Symptoms of reaction include severely painful skin nodules, fever, enlarged and painful nerves, painful and red eyes and disability of hands and feet. Reaction can flare up at any time, even after completing MDT.
Recently there was a mini leprosy elimination campaign and over 200 new cases were found in one week. Active case finding is very costly as you have to mobilise people and train volunteers. Stigma often stops people coming forward but if they wait too long it can lead to disability. We also do skin camps in highly endemic areas and we run public awareness campaigns with different partners to encourage people to seek help if they have leprosy symptoms.
Attitudes are changing but stigma is still present in the community and it means people are still hesitant to come forward. Only when the disease has become problematic will they come. Women with leprosy may be treated badly by their husband or In Laws. There is a lack of knowledge about how infectious it is – it isn’t as infectious as some people think but it is still a mildly infectious disease. We have treated many families where every family member has had it but there are other families where just one member has it and no one else. But people often think of very deformed leprosy patients when they think of the disease and that is why they are very fearful of it. Deformity and disability associated with the disease is the cause of stigma. So early detection of cases helps to prevent deformity and disability and subsequently stigma.
There are more than 3,000 new cases of leprosy in Nepal in a year. It will take some years to achieve a very low level of leprosy in Nepal. As we run awareness campaigns and mini camps we will see an increase in new cases in the coming years.
Doctors specialising in dermatology at different medical schools in Nepal come to Anandaban hospital for two weeks every year to learn about leprosy. This is part of their curriculum, so it’s one way to transfer skills and raise awareness. We get about 10 doctors a year doing postgrad studies in dermatology, so they get full exposure to leprosy which helps new cases to be detected. In Nepal we diagnose around 3,200 new cases of leprosy and out of them 23-30 percent develop reaction. Therefore, it is very important to identify patients during their initial reaction phase, hospitalise them and treat them so that their lives can be saved and disability prevented.