– We are well taken care of here by the health workers and staff, but it used to be better, he explains as we sit down. As part of the state’s reparations for past injustices, the patients here receive free leprosy medication and a state stipend corresponding to minimum wages.
– With leprosy, you are very fragile. If the sun is shining, you must beware of sunburns, if it is raining, you can get soars. Everything that is damaging to the skin is doubly so for us. While medication against the disease is free of charge, medication for other skin conditions is not. I have developed a rash, probably a fungal infection, but I cannot afford the cream.
Hernández lets out a sigh, before he again smiles and adjusts his crutches. Despite severe disabilities, and an amputated leg, he smiles a lot. The story of his disease illustrates how stigma and past abuses still impact people affected by leprosy today, and how this is a hinderance to eradicating the disease.
– For all my life, I have been a carpenter. I used to have my own workshop. When I was fifteen or sixteen, I started developing small marks on my forehead, followed by depigmentation in the skin on my arms. When I was 24 years old, a nurse told me it could be Hansen’s Disease. I ignored her. The word she used, “lepra” was very frightening. I didn’t want people to find out; I knew that would mean rejection. Stigma is still very strong here in Colombia, he explains.
– Then, about a decade later, I developed rashes and a strong fever. I had started to develop purple spots, and lost sensation in my skin. I went to the hospital, but they could not find out what was wrong. They asked if I had been in the jungle, or in an area with yellow fever. I said no. This is when I remembered what the nurse had told me. I told the doctor: “This is probably leprosy”. The doctor replied: “Don’t be silly!”. I contacted the hospital director and asked for a leprosy test, but then my father got sick, and I had to return to Bogotá to take care of him, he recalls.
The fever subsided, and eight more years passed before he again sought out a hospital. Meanwhile, the symptoms had slowly gotten worse, and Hernández was already dependent on crutches.
– At the hospital in Bogotá, there were many tests. Again, they could not explain what was wrong with me, and again I mentioned it could be leprosy. This time, they agreed to request a test from a hospital specializing in Hansen’s disease. The result came after three or four days: “You have leprosy”. The doctor asked: “Why are you so relaxed? You have leprosy!”. I said: “I know, and I have known for some time. I have had time to process.” In reality, I had known this for many, many years.
I asked Hernandez if I could share his story with the world, pointing out that in the period he had the disease, he could have infected others.
– Yes. Please share. It is important to continue talking about leprosy, because we have lost a lot of attention from public health. Less attention means that we don’t get help before the disease has progressed; it means that the doctors don’t know how to recognize the disease, and that they don’t prioritize us. Several times, I was told there was nothing the doctors could do. But once I got the diagnosis, I got the medication, and the disease stopped. If I had known this earlier, the disease could have been stopped earlier. But I was stubborn, I refused to accept I had leprosy; I was ignorant, I didn’t know there was a cure. I have suffered a lot for my stubbornness, for my pride, for my ignorance. It helps to have a special place for us, like this, but I don’t want this to happen to others. Tell my story. Remind people of leprosy, remind people of us patients who need care. Don’t forget us. Leprosy is not theoretical; it is lived experience. We are afraid of being forgotten.