An overview of the impact of the stigma of leprosy worldwide and details about two UK-based charity organizations that support persons with leprosy are provided below.
Impact of the Stigma of Leprosy Worldwide
Perception of Leprosy
- According to Lepra, 3,200 people had leprosy in Bangladesh in 2016 and children accounted for 5% (or 160) of that number.
- The stigma of leprosy in Bangladesh causes those affected to face prejudicial treatment that prevents them from accessing screenings which hinders them from being able to detect the disease in the early stages.
- Leprosy is often associated with disturbing imagery, and disfigured bodies which often lead to the affected being abandoned, socially isolated, and condemned by society. Suffice it to say, many have been disregarded as their voices aren’t being heard and have been affected by mental health issues because of this, in many countries.
- Many people believe that once diagnosed with leprosy, patients become disabled, and are continuously mutilated until they are destitute. They also think it is hereditary.
- A study entitled, ‘Perceived Stigma towards Leprosy among Community Members Living Close to Nonsomboon Leprosy Colony in Thailand,’ found that 54.5% of persons without leprosy felt embarrassed in their communities. In addition to this, 49.8% of them did not want to buy foods from persons with leprosy and 47.1% think it’s difficult for persons with leprosy to find jobs.
- Based on this study, in Thailand, 61 year olds or older and those who believe the disease is a punishment by God, hold the highest level of stigma towards persons with leprosy.
- In India, many people fear being contaminated by persons who have the disease and often exaggerate their fear which can become unwarranted.
- There is obviously a lack of knowledge surrounding leprosy in some countries as one 2018 survey in Cameroon revealed that “one-quarter of 233 respondents believed leprosy was caused by a spell”.
- In countries such as Nepal, it believed to be “a punishment for misdeeds in a former life.”
How Stigma Affects Persons with Leprosy
- A 2015 study in India describes leprosy as a biosocial disease because the stigma associated with it is “based on religious, sociocultural, psychological, and demographic experience over centuries of human existence.” Patients can develop “develop self-hatred and disgust, expressed as diminished self-esteem, lack of socialization, seclusion and isolation”.
- The stigma causes people who are affected to be discriminated against, to lose opportunities to be gainfully employed, and face derogatory remarks from others. It does not only affect the patient but is also extended to the family, who might also be ostracized.
- The shame that comes with being shunned with the disease causes patients to not seek early consultation and not get timely treatment, which leads to more transmission of the disease and increases the likelihood of them becoming disabled.
- Some patients are eventually stigmatized by their own families which results in them staying in the confinement of their own home if possible, or being checked into a facility where they are then forgotten. As an individual, the effects are even greater because it may lead to “divorce, unemployment, displacement from the area of residence, psychiatric disorders, and even suicide.”
- In the workplace, leprosy patients face dismissals, and “lack of solidarity or companionship in their work space”.
- Overall, the stigma associated with leprosy leads to high disability rates, and greater delays in getting treatment.
Trying to Change the Perspective of Others Surrounding Leprosy
- Because of the stigma that exists around this disease, a project was launched in Addis, Ethiopia to help in changing the perspective of those who treat persons with leprosy as outcasts in their own country.
- The ‘New Face of Leprosy Project’ depicts the personal journeys of people who have leprosy and shows how they have managed to live healthy lives, and hold a steady job which is a completely different scenario from the existing stereotypes.
- Recommendations to reduce the stigma of leprosy includes integrating leprosy services in regular health care, implementing information, education and communication (IEC) programs, developing socio-economic rehabilitation (SER) programs, renaming the disease, and providing counseling services.
- Nepal Leprosy Trust recommends community-level health education incorporating cultural beliefs in the teaching, to help reduce the stigma associated with leprosy.
UK-Based Charities that Support Persons with Leprosy
1. St. Francis Leprosy Guild
- St. Francis Leprosy Guild is a UK-based charity organization that was founded in 1895, “a group of lay people in London”. It was originally called St Francis Leper Guild, but was recognized with its current name in the 1960s.
- It has been working to provide support to persons who have leprosy in countries such as “Bangladesh, Brazil, DR Congo, India, Nigeria, Tanzania, [and] Vietnam”, Philippines, Egypt, Ethiopia, Liberia, Zambia, Nepal, China, Pakistan, Thailand, Sri Lanka, Kenya, Ghana, India, Uganda, Madagascar, and Burma.
- The organization does not discriminate against religion or race and has helped 80 Leprosy Centres globally.
- In its campaign to fight leprosy, St. Francis Leprosy Guild managed to help over 16 million people with the disease to get treatment.
- St. Francis Leprosy Guild strives to show compassion to the people, help to sustain them and give them hope. It does this by supporting people with leprosy through annual grants provided to various centres and one off grants/elective student grants.
- The charity makes grants to both organizations and individuals to help in the fight against leprosy. It helps in the provision of training, relief of poverty, famine relief, disability, advancement of health, and housing for the disabled, young people, children and the elderly.
- St. Francis Leprosy Guild’s target population is those who are affected by leprosy in “Bangladesh, Brazil, DR Congo, India, Nigeria, Tanzania, Vietnam and many other countries.”
- The charity has also provided financial support in the form of annual grants to countries such as in Bangladesh, Brazil, India, Kenya, Liberia, Madagascar, Myanmar, Nepal, Nigeria, Pakistan Sri Lanka, and Uganda, Philippines, Egypt, Ethiopia, Liberia, Zambia, China, Pakistan, Thailand, Kenya, Ghana, and Burma.
- Medical students are also given some support through specific one-off grants to help them as long as their studies relate to the treatment of leprosy.
- The Guild has been targeting people living with leprosy in the Amazon.
Examples of Funds Raised
- St. Francis Leprosy Guild raises funds through donations which can be done online using Virgin Money Giving Donation form, legacy donation which can be done by contacting the administrator, sponsorship and events such as Quiz Nights and Fun Runs, single donations through its administrator (firstname.lastname@example.org), regular donation which can be done using a bankers order, Gift Aid, a payroll giving scheme, and share giving. However, the means to raise funds is not limited to these activities.
- JustGiving is a platform used by many to give donations to St. Francis Leprosy Guild.
- The Guild has been seeking donations of £30 to help maintain the hospital ship which is being used to help in the prevention, early detection and treatment of persons with leprosy and is being run by Dr. Tony Lopez Gonzalez.
- In 2019, St. Francis Leprosy Guild through its outreach projects and donations, managed to detect “nearly 2% of the world’s new cases of leprosy.”
- In 2019, the Karunalaya Leprosy Centre and New Hope Rural Leprosy Trust in India both received one off grants for “[c]ontribution towards making good following damage caused by Cyclone Fani in May 2019.” In addition to this, two medical students (one in India and the other in Nepal) received one-off grants to study abroad and in the area of both the care and the treatment of leprosy.
- In 2020, St. Francis Leprosy Guild helped several support centres that are helping people with leprosy. The organization supported centres in Bangladesh, Brazil, India, Kenya, Liberia, Madagascar, Myanmar, Nepal, Nigeria, Pakistan Sri Lanka, and Uganda with grants totaling £116,000.
- Lepra is a UK-based charity organization that was founded by “Sir Leonard Rogers, Reverend Frank Oldrieve and Sir Frank Carter” on January 31, 1924, and was originally named British Empire Leprosy Relief Association (BELRA). It was renamed to British Leprosy Relief Association (LEPRA) 40 years later in 1964, and later became known as Lepra since 2008.
- Lepra works alongside governments in project countries to support, train, and strengthen the health systems to be better equipped to handle and treat people with leprosy and/or Lymphatic Filariasis (LF).
- It has developed strong ties with project countries and has helped them to fight leprosy over the years of its existence in providing treatment such as Dapsone (1945) and multidrug therapy (1975), expanding its presence in India with the establishment of The Leprosy Society of India (1989), introducing health education vans in India (2000), setting up health camps (Bangladesh 2006), starting self-support groups for “women with lymphatic filariasis or leprosy” (Arogya Disha, India, 2012), starting skills training for people with physical disabilities in Bangladesh (2013), funding work done by “Netherlands Leprosy Relief (NLR) in the Zambezi province of Mozambique”, and providing skills training in the Mutemwa Leprosy Care Centre in 2019, after signing a “Memorandum of Understanding with the John Bradburn Memorial Society in Zimbabwe”.
- Lepra’s work is made possible with its donations, fundraising, volunteers, corporate partnerships, and partnerships with government and other institutions.
- Lepra has diagnosed and treated 283,000 people across India, Bangladesh and Mozambique. It has brought awareness about leprosy to 1.46 million people, and provided 36,785 protective sandals to people to prevent any further disabilities.
- Lepra’s current target population is persons who are affected by leprosy and Lymphatic Filariasis (LF) in “India, Bangladesh, Mozambique and Zimbabwe.”
- In Bangladesh, the areas of focus are usually poverty-stricken and these include Bogra, Sirajgong, Pabna, and Natore, Dinajpur, Lalmonirhat, Kurigram, Sylhet, Maulvibazar, Habiganj and Sunamganj.
- In the earlier years, work was also done in Uzuakoli, Gambia, the Gold Coast, Nyasaland, Sierra Leone and the Cameroons.
Examples of Funds Raised
- Lepra gets funds for its work through donations and fundraising activities. Lepra encourages persons to donate by assuring them that their gifts will have long-term impacts (e.g. for the Leprosy Transition project). Persons are encouraged to arrange their own fundraising for Lepra using websites such as Just Giving or Wonderful. They also use events like marathons (e.g. London Marathon 2020), and steps challenge (with a donation of £25), and encourage others to host life changing tea, and the giving proceeds to the cause.
- The organization also raised £212.72 from shoppers who used the Give as you Live platform, and a total of £538.51 which also includes funds raised from Give as you Live Donate, Everyclick, and other (e.g. rewards or retired products).
- Lepra seeks gifts in the form of £15 per month from anyone who is willing to give; to raise funds for its Mental Motivator Project which it claims can help up to 120 people.
- The organization received funds from the Sasakawa Memorial Health Foundation for its Nutrition Education Project in Bangladesh and also sought gifts of £28 to raise additional funds. It stated that this amount could sufficiently support a “self-help group for three months” to learn new skills.
- Lepra used ad campaigns on social media to raise funds for specialist shoes.
- Lepra launched its Mental Motivator Project in Bangladesh in 2019 which has 30 trained people to act as counselors and support people who are struggling in dealing with a diagnosis of leprosy and lymphatic filariasis, across four districts. The project aims to help up to 10,000 families by enhancing their “self-esteem, status, social interaction and inclusion within their immediate community and wider society”.
- Lepra launched its Leprosy Transition project to give people of Sirajgonj, Pabna and Natore Districts more access to screenings and increase staff’s knowledge through training so that they are able to detect the disease early in patients.
- Its Nutrition Education Project in Bogra district, was to increase the awareness of the need to have balanced diets among persons with leprosy and those that are already at the child-bearing age. It was expected that with the knowledge gained through the project and its self-help groups, both males and females would have improved nutrition.
- Lepra got involved in the #givingTuesday campaign on social media to both raise awareness about leprosy and raise funds and also engaged celebrities to help with the initiative. It received 37 images (9 from celebrities), and more than 11,000 impressions on Twitter. It “raised £334 for our specialist shoes” and was “featured in the UK Fundraising online magazine”.