[Survivor Series] My family understands Leprosy is not contagious

I am Shankar Mali and I am a 46 years old leprosy patient. I am from Odisha, but for the last 26 years, I have been living in Delhi for my treatment. The state does not have many facilities for my treatment. I could only get one medication, but not a place to stay.

I have a wife who works as a domestic maid and a son who is a student. Besides them, I also have three brothers and their wives in the family. 

When I came to Delhi, I had a bad ulcer and had to get my foot cut. I did not want to leave my family behind, but I did not have any other option as it was an important treatment. 

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Thankfully, my family were not upset and disowned me. They have read enough to know that leprosy is not contagious.

Every two years, I would go via train to my hometown and meet them. Sometimes, they would also come to Delhi to visit me.

However, with the issue of regular ulcers — which needs constant dressing — travelling becomes an issue. We need a lot of dressing, and that is key to managing our condition. 

A lot of times, people don't realise they have leprosy and that they are bleeding from the inside. Often parts, in my case, my legs, get numb, which means there is an issue inside, but we don't have any sensation.

This means even if a keel goes in or hot chai is spilt on us, we don't feel anything — and getting regularly dressed becomes crucial for us leprosy patients. 

Today, I live in the Leprosy Control Colony in Delhi — a small community that has not just helped me find a place to live but has also given me immense respect and each other.