Leprosy – still a challenge
- Every other minute someone is diagnosed with leprosy. Yet many do not know that the disease still exists, or they lack knowledge of the signs, symptoms and treatment of leprosy. People are not aware that leprosy is curable, it is not highly contagious, and most people have a natural immunity. Lack of knowledge and understanding about the disease is one of the key challenges. This is a barrier to education, employment and community participation, says previous participant Rakchhya Maharjan.
Rakchhya Maharjan is from Nepal. She works with The Leprosy Mission Nepal (TLMN) and spent seven months in Myanmar on exchange with The Leprosy Mission Myanmar (TLMM).
- The Leprosy Mission Myanmar is a leading disability organization in Myanmar, a sector I am very passionate about. I wanted to learn as much as possible about the numerous community-based disability inclusive projects implemented throughout Myanmar whilst sharing my own knowledge in leprosy, other Neglected Tropical Diseases (NTDs), disability and research, she says.
The Leprosy Mission
The Leprosy Mission (TLM) is an international Christian organization founded in 1874 and is the oldest and largest leprosy-focused organization in the world. TLM’s focus is on leprosy, but their work also includes other people with disabilities, NTDs, marginalized people and those living in extreme poverty. TLM is a holistic organization.
In 2018 the FK funded project Improving quality of leprosy and disability services started. The project is a south-south collaboration between The Leprosy Mission Nepal (TLMN), The Leprosy Mission Bangladesh (TLMB) and The Leprosy Mission Myanmar (TLMM).
The programme was established as a response to the need of increased and improved knowledge and capacity within the field of leprosy and disability. There are very few leprosy experts in the world today and the exchange programme will be an efficient way to develop and maintain the knowledge.
Old myths and superstition
Due to myths and superstition, there is a great deal of fear associated with leprosy. People diagnosed with the disease can be stigmatized, rejected by their families and local communities. They may lose their jobs and end up without a source of income, some lose their homes. Out of fear many affected by the disease hide the first symptoms. The disease along with the stigma can often result in psychosocial issues.
TLM contributes with the expertise in treatment as well as in counselling and self-advocacy.
- There is a low level of knowledge about the key signs and symptoms of leprosy in each country. General health staff in local health care centers are not qualified enough to diagnose and treat leprosy, hence the need of qualified organizations such as TLM who work side by side with the respective governments and national leprosy programmes, supporting them in diagnosing leprosy and also in building their capacity, says Rakchhya.
Say Say Phaw, partner contact for TLMM agrees with Rakchhya Maharjan.
- This is very important as training in leprosy these days has become of less importance with the proclamation in 2003 that leprosy is no longer a public health problem. As TLMM we are keen to maintain leprosy expertise which is disappearing at a high rate. This project helps to build expertise within TLMM and its partners. Luckily FK Norway chose to support this project.
Social inclusion is an important part of the project. Earlier, people suffering from leprosy were confined to institutions and pretty much left on their own. Continuation of provision of quality services including medical treatment and rehabilitation, organizing people affected by leprosy, other NTDs and disabilities in self-help groups for socio economic growth and support in advocacy and awareness programmes are some activities that foster inclusion in communities. Knowledge regarding these very activities are being shared and learned through this exchange.
- Advocacy having a positive impact
- An example proving that advocacy having a positive impact was the repeal of the 1898 Lepers Act in Bangladesh in 2011. This law had confined people affected by leprosy to state-run institutions. Although stigma and misunderstanding surrounding leprosy are still rife, people affected by the disease are now better equipped to integrate into society and access benefits available to them, says Rakchhya Maharjan.