Leprosy and its treatment affect people in different ways, but life must go on.
|The author signs copies of the Portuguese edition of her book on a trip home to Brazil earlier this year.|
I believe some people already know, but it is always good to remember: leprosy is curable. And because leprosy is curable, a normal life after leprosy is possible; at least, it should be.
I was diagnosed with multibacilliary leprosy in January 2012. Following my diagnosis, I experienced many ups and downs, several immunological reactions and various complications. At the beginning, I was desperate. Even as an informed person, I had to confront the age-old image we have of leprosy as some kind of punishment: what had I done wrong in my life to deserve this disease?
Nothing, of course; but I was ill, and this was the turning point. I had leprosy and nothing could change this fact. All I could do was follow the treatment and hope for an end. I had only one motto: “Just keep going; you will make it!”
Unfortunately, people affected by leprosy are impacted by the disease in many different ways. There is the stigma, the pain and the often-forgotten side effects of the treatment, which can also cause deep depression, as happened in my case. Without proper treatment, this can still be an issue, even after the cure.
I took multidrug therapy until May 2013. But I had to take corticoids until January 2015. The last reaction I had was in December 2014. Now I have almost the same skin as before the disease; only small scars remain. My left elbow and right knee are still numb; that is all.
Despite everything, I should consider myself as one of the lucky ones. I was already living in Germany when I became ill. I have access to a pretty good health system that maybe I would never have had access to in Brazil, where I come from. Plus, I did not have to deal so openly with the stigma of the disease.
After I was cured, I decided to publish the diary I kept during the whole treatment process in the form of a book.* I decided to use my experience to raise awareness. More than that, I wanted to show people that there is life after leprosy. I was proud of myself. I managed to keep going.
Many things have changed since then. I became more informed, contacted some organizations that work in the field, and got to know interesting people. This was also the beginning of my public life. I did not stop with the book. I do educational work, visiting schools, universities and NGOs in Europe to talk about neglected diseases. I do presentations, give interviews and write articles. Without experiencing this disease, I believe I would not have discovered the meaning of my life.
My book has already been published in German, English and Portuguese. In Brazil, it is being distributed for free among people affected and NGOs. Currently, I am working for a German aid organization, which supports projects in more than 90 countries around the world. I am a member of the Advisory Board of the Austrian Leprosy Relief Association and support the work of the International Federation of Anti-Leprosy Associations. I keep going.
When we talk about leprosy and other NTDs, we should also consider the social component. In some communities, a person affected can barely find work and participate in society; he or she is ostracized. This and the disease itself can lead to a deep depression, a life without dignity, and oblivion. If health professionals, supporters and advocates understand this dynamic, however, it should be possible to break this vicious circle.
I can see the situation both from the perspective of a person affected and from the perspective of NGOs. One of my goals is to spread the message that we should make life after leprosy possible—not only with medicines or hospitals, but by empowering people, giving them voices, fighting stigma and discrimination, and enabling a participative approach.
When I was being treated for leprosy, it was very important to me to be perceived as a human being, as a person with feelings, who is able to decide about her own life and path. We need to put people first. People affected need a chance to be part of the decision-making process about what happens to them.
It may be complex, but it is not impossible.
Evelyne Leandro is the author of The Living Death: The struggle with a long-forgotten disease.
* See Book Review, Issue #85