Nurse and teacher Paula Soares Brandão discovered she had Hansen’s disease during her last term in nursing at the University in Rio de Janeiro in 2002. At first she felt some numbness on her upper thigh. After several months of inconclusive tests, Paula was diagnosed with indeterminate Hanseniase. In 2009, Paula began her master’s degree, and continued to research Hansen’s disease for several years. In 2015, Paula began a teaching career at the Nursing University of Rio de Janeiro, where she ensures that all of her students are well-educated on Hansen’s disease.
As a supporter and participant in MORHAN (Movimento de Reintegração das Pessoas Atingidas pela Hanseníase) or Movement of Reintegration of Persons Afflicted by Hansen’s disease, Paula has spent more than a decade supporting and advocating to make certain articles of the Declaration of Human Rights are a reality in her work and through MORHAN. Particularly relevant for Paula are Article 5: No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment and Article 21: Everyone has the right to take part in the government of his country, directly or through freely chosen representatives.
Why don’t you tell me a little bit about yourself.
I am Paula and I was diagnosed when I was 22 years old. I was in the last period of the college of nurses. Now I am a nurse, and I am professor.
What does leprosy mean to you?
I never say leprosy because in Brazil we say Hansen’s disease. Leprosy for us means stigma. Okay, because the word of leprosy is a Biblical name and when you say leprosy or you say leper, you say these people are marginalised people. It’s a not good name.
When I got my diagnosis, the first thing in my mind was, I have leprosy. But ‘I have leprosy’ means bad things will happen. My family will segregate me, my friends will segregate me, my work will segregate me. Then I understood I didn’t have leprosy, I had Hansen’s disease, because the time is different. Leprosy is a historical disease. Hansen’s disease is the current disease, the curable one. I think leprosy is a stigmatised disease. When I think about this and when I fought this, I became very depressed and I become shy and it’s no good. But when I knew the group from MORHAN and other people that have Hansen’s disease, I think it’s not a problem because the disease is curable.
What does this disease mean to you personally?
Hansen’s disease changed my life, because I was one Paula before the disease and I was another Paula after the disease. I now know other people with Hansen’s disease, the social movements, the work, and talking to other people about my experience and why this is important for me. Because I have the possibility to help other people and when people suffer from the stigma or have self-stigma, you need to choose to change this situation. I have the conditions to change the situation because I have a good family and familial support. I have good friends and their support. I have a profession and the support from them. And I think the stigma is a situation society creates. It’s very complicated because for me the worst part of the stigma is the segregation. It’s, for me, the worst because in my conception it’s not possible one person lives alone in life. You need other people, you need to love, you need to care.
When I was sick, I suffered the stigma but it has not affected my life as it has affected life for other people. For example, I have one friend and she didn’t know that I have Hansen’s disease. I visited her house and she said to me and her mom, oh Paula see the spots on my mother? I think this is leprosy. If my mother has leprosy she can’t see my baby (because my friend was pregnant at this time). And when she said this thing, I didn’t have the courage to talk to her about how I was sick, that I had Hansen’s disease.
And not only this, when I took medication I had Hansen’s reaction. And I had treatment for reactions and I changed [because of] the treatment. My skin is very white and there was a change in my colour of skin and everybody asked me, wow, Paula you have beautiful skin. I know that everybody was thinking about this and I said to everybody I was going to the tanning machine.
Another thing, I became fat with the medication. And for me it changed my life because in Brazil the woman needs to be a beautiful woman, I feel. I was so young when I had it, I was 22 years old, and it’s not good for me because the boyfriends, the friends, everybody asks why you are fat. What happened? And, for me, it’s not good.
Did you find that the stigmatisation that you had didn’t come from outside, more it came from within you?
Yes, but I think I had self-stigma only in the first moments. The impact of the diagnosis when the doctor said you have Hansen’s disease. In my mind, I have leprosy in the first moment. But after two days I think, no it’s a curable disease, not a problem.
And then I told my family. My father said for me, daughter it’s better you have Hansen’s disease than you have cancer. Because Hansen’s disease is curable and my father, when he was young, he had tuberculosis. For him, this is not a problem. After my parents, I told only good friends. After that I told my work colleagues.
The health minister in Brazil invited me to record a video in 2006. This video is a story that many people have Hansen’s disease, the life doesn’t stop, and [it has] the stories from women’s and men’s view on having Hansen’s disease. This video was distributed only in my city initially. But the health minister decided to distribute the video for all the country. After this, everybody knows me because of the video. The first time I see the commercial I think, oh my God people they now know about how I was sick. But the people hug me and are careful with me after this.
What misconceptions do you think have affected you most?
I’m very sad when I see people segregating other people. I’m sad. When you have the segregation, I think that it’s possible we change this. We are the people affected by Hansen’s disease but we are the citizens, we are the persons, we have a life, our friends, our family, marriage or a boyfriend/girlfriend, we are human. We are human, not an animal or something, we are a people, only people, and we can only be happy and live our lives.
Do you think that the medical professionals understood Hansen’s disease properly?
Yes, in Brazil. Yes, but it depends on the area in Brazil because we have some places where the diagnosis is later and the professionals have the prejudices with the patients.
What is the one thing that you think needs to be done right now?
I feel I have a mission. The people affected by Hansen’s disease in MORHAN and Nepal and other countries, we are special because we have a voice. We bring our voice and we need to show the society, the medical profession and all the society, that what we need is respect of our rights. What we can do, we talk about our problems, our decisions, our rights and we fight for this.
Human rights are affected by the policies, the political attitudes. We are vulnerable people and in many countries, we don’t have the power of governments. We want the right of the voice. And for us this is important because it’s not only me, individual social participation, but social participation for us. Everybody needs to have the same rights. I feel a better world, a better country, a better community and we fight to improve this.
I think women and the children suffer more than other persons, because when you are a woman, your rights depend on the society. In Brazil there is discrimination. You need to fight more for your rights because you needed to fight for education, for healthcare, and you need everyone to fight for you when you are woman.
**Conversation was edited for publication**