Dong-Seok Lee is studying for a degree in medicine at Imperial College in London. He shares here his enthusiasm for helping persons affected by leprosy.

Working with leprosy is widely misunderstood. When I start talking about leprosy work, people assume it’s hard work which needs a great amount of dedication. Yes, given the strong stigma attached to leprosy, it is difficult to make a first step towards leprosy work. However, once the decision is made, it offers a unique and rewarding experience.

 

I remember following church missions in the early years of the new millennium to a leprosy village. In 2005, I helped out as an interpreter when medical missionaries went to the village. In the same year, there was a personal project to do as a part of school curriculum and I thought it would be very unique to do something on leprosy. The goal of my project was to make two patients happy. During the process, I found many charms in working with leprosy and decided to continue even after the project finished.

 

In the early stages of my interest in leprosy work, I searched for a volunteer programme designed for high school students, but I couldn’t find one. So I created small tasks that I could do as a student. Despite my lack of experience, there was so much I could do and learn. Sometimes, I distributed gifts to the patients with my friends. Or I could attend leprosy polyclinics and learn about clinical skills and so on. At other times, I could get in touch with a leprosy organisation, and collaborate with them to spread awareness about leprosy in my school. The process of pioneering for things to do was fun and rewarding, while helping me to be more creative. To do the activities I’ve mentioned above, my initiative wasn’t enough and I needed help from others. In the process, I made friends who would share the same vision of eliminating leprosy from the world. The doctors and nurses taught me a lot about the disease and gave me plenty of materials to read.

 

From the readings I’ve done and in my experience working with leprosy, I personally think that the greatest aspect of leprosy work is management of fear. The bacterium that causes leprosy, Mycobacterium leprae, was discovered by Dr Armauer Hansen in 1873. The cure for leprosy multi-drug therapy (MDT) has been implemented since the 1980s; prompt MDT treatment prevents impairments and disabilities thus leaving no trace of leprosy. Moreover, a patient going through MDT is not infectious to others. Added to that, leprosy is not a life-threatening disease. And yet there’s still an uncomfortable fear attached to leprosy. From what I’ve seen, a surprisingly large number of people recognise leprosy as not being highly infectious. Yet, when those people encounter a patient, I have been able to sense the feeling in them “what if I’m the unlucky one” or “let’s be safe just in case”; I know this, because I used to have the same hesitation.

 

What makes leprosy so special is that it can cause physical impairments, as well as being  infectious. Although there are diseases which are more disfiguring or more infectious, a disease that has both characteristics is rare. On top of that, leprosy is mentioned in religious texts, often as a cursed disease. Fear affects all people concerned with leprosy. Firstly, the patients are afraid of physiological damage from the disease; and even greater still, the fear of being labelled as a “leprosy patient” by the community. Secondly, society fears the infectiousness of leprosy. Lastly, health workers are responsible for dispelling the fear of leprosy from the patients as well as the society. At the same time, health workers themselves should also be free of myths about the disease.

 

Personally, I found the presence of fear challenging, but at the same time something that makes leprosy work very rewarding. It was hard to eliminate fear in other people (patients, school friends, etc) when even I still had doubts about leprosy. However, during the process of giving emotional relief to patients, I made friendships with them and found myself doing something worthwhile for the patients.

 

The single most enjoyable aspect of working with leprosy is meeting patients and leprosy health workers. Whenever I make a visit to a place related to leprosy, whether it may be a clinic, village, or a volunteer organisation, I find myself extremely warmly welcomed. Those places are happy to have my presence; and I can bring joy to the people there. Because of the lack of volunteers in leprosy, there’s still a plenty of scope to do something of great value. Even a small gesture of help is appreciated by the patients.

 

Personally, meeting people is my favourite aspect of leprosy work. Whenever I visit wards where the elderly ex-patients live, I sit with them and talk about random issues. The ex-patients repeatedly thank me for spending time with them. I did not need to arrange a grand project to make them happy. Actually, I spent a lot of time talking with patients because there was nothing else I could do for them; but looking back, I think that was the best thing I could do, as health workers were too busy to discuss everything the patients wanted to share. This summer, I went to the Sitanala leprosarium just to say ”hi” to everyone. I ended up spending six hours. After being away in the UK for a year, the patients and the health workers had so much to tell me. I feel grateful to them that they want to tell me their ideas, concerns and, sometimes, their stories.

 

Even though I genuinely enjoy working with leprosy, I am not a consistent worker. I admit to taking more interest in leprosy only when I run out of other things to do, or when I have been able to link leprosy with school work. And yet, I somehow get pulled back to leprosy when I have stayed away from it for a long while. This is because leprosy offers me more than what I do for it. Whenever I finished any major school exams or projects, I would go to the leprosy hospital and refresh myself. Whenever I have encountered personal difficulties, I also went to a leprosy hospital, and had an opportunity to resettle my thoughts by occupying my mind with patients or work instead of worrying. Leprosy has always been there when I needed comfort. And I will give something back to leprosy whenever I find I have free time. If I can’t find free time, I will make an excuse to link something to leprosy, like I have done up to now.

 

Contact:

Dong-Seok Lee: dongseoklee@yahoo.com

 

 

 

 

 

 

 

 

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