Our sense of self-worth is getting ever stronger

“It happened when I was nineteen. I barely finished high school and wanted to become a teacher or social worker. Because I suffered knee pain, I went to see a doctor. He thought it was rheumatism and prescribed medicines. Although I took my medicines, my health did not improve.

My both hands and feet became deformed. But it’s not in my nature to give up hope

When spots started to develop on my skin as well, I returned to the health centre and was diagnosed with leprosy. Because the diagnosis came so late in the process, my both hands and feet became deformed. My dreams are gone. To me, my inability to work is one of the most difficult consequences of my illness. But it’s not in my nature to give up hope.

Person affected by leprosy Maurineia at home with her family
The hands of a person affected by leprosy: Maurineia from Brazil

The self-care group I attend is an important source of support to me. We’re 30 in total, and I have been a member and coordinator for four years now. The group gives us room to discuss the problems we encounter because of our illness. The relationships we have amongst ourselves strengthen our sense of self-esteem – we’ve really become friends.

Person affected by leprosy Maurineia is the leader of a selfcaregroup
Maurineia is the leader of a self-care group for leprosy patients.

The relationships at the self-care group strengthen our sense of self-esteem

Leprosy continues to be associated with stigma. It is like in the days of Jesus, when we were called lepers and people did not want to come near out of fear of infection. My daughter Vitória often joins me to the self-care group. It is important to me that she learns to relate to people affected by leprosy, free from prejudice.