I met Jackson, the occupational therapist in his office. We ran around organizing our leprosy outreach program. Finally we set out in the safari jeep and wound our way up into the hills on horribly bumpy footpaths (roads). We parked in the shade of exceptionally tall banana trees. Following a narrow dirt path through the banana and coffee plantations we arrived at the our first home visit. There was a cleanly swept dirt patio between two mud and straw huts. Colorful coffee beans laid out in the sun drying. A radio played in the garden where an old man was bent over working. Jackson called to him. As he hobbled over to the patio where we stood I could see that he had been affected by leprosy. His face was characteristic of an old lepromatous case with missing eyebrows (madarosis), long floppy earlobes, a lion’s nose (flattened bridge), and a toe emerging suspiciously from a hole in his rubber boot, suggesting that he could not feel it: an anesthetic foot. He smiled with his whole face and eyes and even his embracing arms. He told Jackson he would go to fetch his wife who also had suffered from leprosy.
The old man disappeared in the garden and Jackson and I waited in the shade. His wife appeared wrapped in two different patterns of African wax cloth. She had no fingers on her hands and yet she carried a hoe. When she came to where we waited she bent over and began working the soil, showing us that she could farm despite her deformity. After she had broken up the ground with the hoe she reached into a bucket of beans and scooped a small pile out with her palm, pouring these beans into her mouth. She bent over the tilled soil and spit one bean at a time into the ground. I was amazed by her innovative farming techniques. She smiled, proud of her work. The husband and wife led us to their pigsty which they had built above the ground to house a sow and her piglets. This sow had been donated by Kagando hospital and now had produced many piglets. We continued down a dirt path to another hut behind their land.
“This is our neighbor,” the old man told Jackson in Lukonzo. He also had leprosy. I noticed immediately that this neighbor, a young and sinewy man, was missing his left leg from the knee down. He wore a prosthetic limb. I learned talking to him that he had stumbled upon a landmine which cost him his leg; this amputation was not due to leprosy. Besides thickened nerves the young man did not show clinical signs of having had leprosy. Skin lesions can fade and sensation and motor function in some cases scan be partially restored years after treatment. I examined the neighbor and asked questions about his understanding of leprosy and experience having had the disease. He told me he understood it was a bacterial infection that could be transmitted, not a curse or biblical consequence which seems to be the local understanding of leprosy. He said people in his village were educated and also understood that leprosy is a bacterial infection.
After finishing his examination and interview I followed the husband and wife back to their hut. I met with them one at a time in their tiny hut. Both of them had contracted leprosy as children in the 1950s. They were given the available anti-leprosy treatment at the time which was apparently effective for the man but not for the woman. Years after receiving the anti-leprosy treatment the wife relapsed. By this time MDT, the current treatment for leprosy, was administered and she has not had a relapse since that time. Speaking with the husband and wife about their lives following this disease that has such a physical and emotional burden I was struck by their happiness and content. There was not a shred of self-pity in either conversation. There was dignity, pride, and fulfillment in their lives. They are farmers. They raised a family together. They interact with their neighbors and village community who accept them.
In a rural setting, to support the life of a person affected by leprosy, education about the disease must be provided to the neighbors and members of the village community. When the village knows how the disease is caused and cured they no longer fear it and push the person affected by leprosy out. In this village education efforts destroyed the stigma of the disease, rendering it a non-issue.
We left the quiet village and went to the home of another known person affected by leprosy (PAL). This was a much different experience. The family sat outside of their well-maintained brick home. We walked around back to the small mud shack in the backyard. Entering the dark hut from the midday sunlight my eyes took a long time to adjust. Blackness. I couldn’t see anything. Slowly shapes began to emerge: a chicken moving around on the ground, a pile of blankets against the wall, a bigger shape… and as I drew nearer I realized the larger shape was that of a person. He was propped up against the wall. As my eyes adjusted I could see his skeletal frame. I could hear soft moans and labored breaths. I could smell urine. I was staring at a starving old man. His hands and feet showed secondary deformity (leprosy) as he was missing all of his digits. His skin was dry and pulled tightly over his sharp cheekbones. He looked as though he was dying.
Jackson appeared in the doorway. When he saw the man he dropped to his feet, examining this frail old patient. We must take him, Jackson said. The patient would need IV fluids and “PlumpyNut”, the Ugandan brand of refeeding nourishment (it is made of milk powder, crushed nuts, sugar, a multivitamin, and oil… all the food groups you need plus the phosphates, potassium, and magnesium you need to avoid refeeding syndrome). Side note on refeeding syndrome: when someone was been severely undernourished for more than 2 days, the refeeding must be done carefully because introducing sugar to the starving body leads to sudden increase in insulin secretion. Then cells can take up the sugar and the liver resumes glycogen and fat synthesis which demands phosphates. This depletes the blood of phosphates. When red blood cells are phosphate deficient and cannot make ATP, the oxygen delivery performance is compromised and organs suffer hypoxia. The other danger when treating a severely starved and dehydrated individual is heart failure. If you pump fluids into the low blood volume individual, the heart suddenly has to work much harder and might fail.
Men from the house carried our starving and dehydrated patient out of the hut and propped him up in the jeep. I sat next to him as we drove back to the hospital. We admitted him to the male medical ward and his refeeding was carefully initiated.
I am still appalled by the utter neglect in which we found this man. The family had tucked him out of sight, denying him food, water, sunlight, fresh air, bathing, fresh clothes, a toilet– everything that we use to sustain ourselves and experience human dignity. Was this old grandfather neglected in such a way because he had had leprosy? Or was it was it his feeble age (of 60!) that led the family to leave him out there. Either way it is shocking to me that a family would treat their own relative with such indifference for life.