New Face for Leprosy 

Story of my life….

I am an unnamed leprosy affected person. Since 2012, I have been involved with a leprosy development organization of Lepra Bangladesh. My aunty was a leprosy affected person, and people from this office used to go there. Gradually, a self-help group developed, and I also became a member of that group. I participated in various meetings and received training for both the group and personal development. The office provided some financial support as seed money to the group, from where the group members took small and started businesses, and gradually, the group began focusing on development.

Then my career began. Alongside my studies, I loved working. My first job was with the FARLeB (Further Action to Reduce Leprosy Burden) Project of Lepra Bangladesh as a community volunteer. Alongside project work, I worked with the group, searched for new leprosy patients through community awareness, and continued my education. Then I got the opportunity to work with the Amra Kori Project and then the Nutrition Education Project (NEP), from which I learned a lot and taught others. Many years passed while I was working; I passed the Higher Secondary Certificate (HSC) exam. In 2014, I was admitted to Hamdard Medical College, and in 2018, I graduated.

In 2017, I started feeling the symptoms of this disease in my own body. I felt less sensation in two toes of my left foot, and a tingling sensation was there. I didn't tell anyone anything for a few days, keeping an eye on my own condition, whether it was sudden or gradual, whether it was improving or a permanent problem. When I realized that these toes weren't normal and matched the symptoms of leprosy, I went to the Upazila Health Complex and started taking medicine. At first, I was afraid to tell my family about this disease, fearing what they would think. I knew that not everyone accepts this disease easily. Even if they accept it verbally, they may hate it internally. I didn't tell anyone because of this fear. I quietly took the medicine. One day, my younger sister saw and asked, and then I told her the truth. They accepted me, but I couldn't tell anyone else in society.

I got married in the year 2019. My husband knows that I am involved with the leprosy development organization, but I am a leprosy patient, he doesn't know. My in-laws also don't know that I was a patient. In my mind, there was a burden that if they didn't accept me after hearing this, what would I do, society would see me with neglect.

Even after marriage, I worked as a mental motivator from my mother-in-law's house. I became a leader of the group, and then worked as a leader at the sub-district level, and now I am working as a secretary of the district federation. Now my wish is to have a good job or business. I have arranged wheelchairs for the patients of this organization, arranged government cards (disability allowance, old age allowance, widow allowance), and arranged government houses. I arranged blankets and food support. I raised awareness on COVID-19 during the pandemic. Working with this organization and the patients, I feel very good from the heart. My desire is to be involved with this organization for my whole life."

Actions to be taken for All Patients:

• Arranging skill development training and opportunity for express their skills for leprosy affected persons will be benefited everyone.

• Providing for the educational expenses of neglected leprosy affected persons' children will be benefited everyone.

• Offering a one-time financial aid for the marriage of helpless leprosy affected persons' children will benefit the family.

• If this organization for leprosy patients can be developed into a business enterprise, all leprosy affected persons can benefit from it.

• In any project within the federation, leprosy affected persons should be given priority.

• Discrimination must be eliminated and appropriate measures should be taken for that.

• Equal rights must be ensured for all our leprosy affected persons, just like for the general public.