My name is Luzia Alves. I am 35 years old, married, and a mother. I live in Teresina, the capital of the state of Piauí, Brazil. I am also a woman who has been cured of Hansen’s disease. This is my story. 

At the end of 2018, I began to feel changes in my body. My skin itched endlessly, especially at night. Soaps and moisturizers aggravated the condition. What worried me most was the change in the color of my skin. I went to see a general practitioner, and he gave me some tests, but he was not able to make a diagnosis. He referred me to a dermatologist. 

The dermatologist looked at all my tests, and asked to see my body. There were no spots, and my skin was clean. I told her about the unbearable itchiness and the irritation from soaps and moisturizers. I also explained that I would end up scratching, and then I would get little bumps. She confirmed Hansen’s disease based on a skin biopsy. When I heard the diagnosis, I temporarily left this world. What do you mean? How did I catch it? All I could think about was my son, my family, and whether I had passed it on to them.

The very polite, very helpful doctor talked to me, calmed me down, and went on to explain the treatment to me. I was told to go on living my life as normal because there was treatment and I would be cured. I was also told that I shouldn’t sunbathe or drink alcohol during the treatment. I was not told anything about possible reactions.

My treatment took one year, starting from January 2019. I tried to live my life as normal, as the doctor said, but it wasn’t easy. I felt fine until the third dosage of medication, when my strength decreased to the point that Brazil’s social security agency, the INSS, authorized three months’ leave from my job in the beauty sector. I dealt with the reactions and carried on. After that, I just had a small color change in my skin because of the medications. I completed my treatment in January 2020, and I was told that I was cured. Thank God!

But later that year my skin blistered all over with swollen lesions that looked like they were going to catch on fire, and I couldn’t walk. I asked for help at the hospital, but at the time I was also suffering from COVID-19 and the doctor who saw me said she couldn’t do anything for me because she did not understand what was happening. I went back to the dermatologist, and she explained that I was having Hansen’s disease reactions. She referred me to Centro Maria Imaculada (CMI), a public medical center for the disease in the city of Teresina. 

At CMI, I was immediately welcomed, touched, and examined. I started taking medication for the reactions and I felt God’s hands touch me and calm me down. While doing physiotherapy, I found out about the Movement for the Reintegration of Persons Affected by Hansen’s Disease (MORHAN).

Connecting with MORHAN changed my life. Listening to members’ stories helped me to feel newly grateful for my family. They have been by my side since the beginning of my treatment, giving me support and never showing prejudice, only caring. I’ve also been able to start changing how I feel about myself. Until I started sharing my own story through MORHAN, only God and I had known how ashamed I was to talk about having had this health problem and my skin having become blemished.

About a year ago, I met Dr. Alice Cruz, who advises the Sasakawa Health Foundation on human rights issues, and Faustino Pinto, MORHAN’s national coordinator. They were organizing a project for documenting instances of institutional and intersectional discrimination, and Alice emphasized the importance of a young woman taking part. I was invited to join the project team as a facilitator for the rounds of conversations with persons affected by Hansen’s disease.

From the conversations, I have learned that some people have stories like mine, and others have suffered more. I try to help others by talking about my experiences, even when strong feelings come up because all of this is recent for me, too. This project has given me the opportunity to strengthen myself as a person affected by Hansen’s disease and as a woman. It is a learning experience that I wish I’d had from the start.