16. A basis for transforming the way that lepers live.
Giving them a new way of life
17. A disease of generations: families are
affected by leprosy as well.
Editor's Notes
Health-related stigma and Leprosy I am introducing two topics that people know little about: stigmas and leprosy.
Among other diseases, leprosy carries a stigma. The affected are usually shunned by society and forced into isolation. Before we even begin to unwrap this myth-based disease, it’s necessary to explain the word “stigma”.
Stigma can be confused by many with the word discrimination. Discriminations stems from formed stigmas but the terms are separate. A stigma is a negative attitude towards human differences. When someone is perceived as different form another for some reason usually mistreatment of that person follows
When regarding health and disease the term “health-related stigma” is coined An us vs. them attitude is firmly established in a stigma Certain illnesses like leprosy carry myths that lead to great stereotypes against people with the disease
But the reality is that many people do not know that they stigmatize, culture can diffuse the mistreatment, especially in countries like India Leprosy is a disease hidden by myth, few know anything about itThe story of Saaj:“My village is Malasakkadu. I used to ride a buffalo cart. I was 12 years old when I found bumps on my body. Then I got rashes and it would not go away. I was riding a buffalo cart and my arms used to hurt. Then my eyes and mouth dropped and I was almost on my deathbed.”
It begins as a small discolored patch on the skin that loses the sense of touchTo test if a patient has leprosy a feather is brushed against the skin : if the person does not feel the sense of touch then they are diagnosed with the disease
Leprosy is not highly infectious. This is the first common misconception. It multiplies very slowly and can take years to develop When left untreated, the progress of the disease can cause permanent skin, nerve, and limb damage. In serious cases whole limps fall clean off of the body completely But leprosy is curable! And obtaining treatment is not difficult
However, we come back to the ideas of formed health-related stigmas The age-old stigma regarding leprosy is an obstacle to self-reporting the illness and receiving early treatment People cower from this idea that they will be shunned from society and hide the fact that they have contracted the disease They fear isolation A process begins: the disease is left untreated and spreads…often becoming an issue of public health The fear of social exclusion worsens the health condition
The meaning of the disease impacts the person more than the symptoms of the disease itself Hearing the diagnosis of leprosy is more troubling than the actual symptoms Logically, we could share the facts of leprosy with the public to help to reduce the stigmas surrounding it Spreading the message that leprosy is a curable disease with obtainable treatment in places like India could be successful
But we come across the problem of tradition and culture in areas like India The discrimination is rooted deeper here than in ignorance Indian culture is insistent of the cursed nature of the disease. Hindus consider the deformities resulting from leprosy a divine punishment. The belief that leprosy is hereditary is also held
So if you contract leprosy not only will you be shunned but your family will be forced into isolation as well Though the scientific breakthroughs we have for leprosy are wonderful, it takes more than scientific fact to break through a community conditioned to a set of beliefs. Lepers need to be reached out to and given aid in the meantime of weakening the cultural conditionings of the disease
Story of Narsappa a boy age 10 who was diagnosed with the disease:His mother began to cry for him when she found out he had the disease. Cries of mourning as if he was dead already. The people of his village charged to remove him immediately. His father took Narsappa to a hospital a couple of hours away and left him. No on came for this ten year old kid. He never returned home or saw his family again. We ask: what hope is there for those affected with this disease in modern India?
Being associated with the disease is seemingly worse than death People with the disease are driven from their homes and villages often forced to live in formed communities of lepers called leper coloniesYou are cast aside when associated with the disease and lose all identity of a person It becomes the priority of the compassionate to bring aid to the colonies India still has more than a thousand leper colonies, home to generations of those affected by the diseases discriminatory attitudes
These colonies are a form of refugee camps for those suffering with the disease They come to the colonies to seek relief from the social discriminations and to try to make a meager living with what they can. Non-profit organizations take over to deliver this relief Completely eradicating this disease is unlikely, so their mission is to make a change for those people suffering with leprosy
Rising Star Outreach is one such organization: their approach to fight the stigmas of leprosy is to provide education for children, provide patients with the ability to raise a business through micro-finance, and to address various issues by providing mobile medical clinics in the colonies.
This is the basis for transforming the way that lepers live Those living with leprosy are among the most stigmatized in the worldThe disease prevents a person from marrying, providing for a family with a career, or even receiving an education. It prevents a person from having a normal life.
In India even the families of the suffering are shunnedPeople begin to fear isolation and hide from admittance that they have the disease, further worsening any condition Cures are out there, but deeply rooted cultural beliefs form a barrier With the help of non-profit organizations we can deliver relief to those desperately in need
We may not be able to eliminate the disease and all stigmas, but we can provide an alternate means of living with outreach programs making a new way of life in leprosy colonies
