Janviere Ahishakiye had everything going well in her life—a husband with whom to build a family and sizeable farmland on which to grow crops for food as well as income.
Life was bliss for her because as a woman, she knew that having a family was eventually going to be the most important part of life, but suddenly things started falling apart with a simple itch on her left leg.
She had been digging in her garden in Musanze when she felt an itch. She scratched it, and went on with her work. Little did she know that this was going to be the beginning of lifetime torment.
“My feet just started swelling the next day. Before I knew it, the other foot also started to swell.”
As a person who had been bubbling with life and taking care of her two children, she thought that it was a simple problem that would be solved with a single visit to a nearby hospital. How she was wrong!
Her own family was the first to stigmatise her as her legs continued to swell.
“I couldn’t even share a cup with my husband. They thought my condition was a contagious disease.”
They made me become a street beggar’ they threw me to the streets to start begging. They stigmatised my husband, telling us that all our children would have the same condition.”
Indeed, Janviere has been a popular beggar in Musanze town after becoming an outcast in her family.
She is one of the several hundreds of people suffering from a disease known as podoconiosis, also known as non-filarial elephantiasis, caused by exposure to irritant soils. Experts say the disease is a result of a genetically determined abnormal inflammatory reaction to mineral particles found in red volcanic soils.
“It is a neglected tropical disease that affects people living in tropical areas,” says Tonya Houston, the founder of Imidido Project, a Musanze-based organisation that provides palliative care to hundreds of podoconiosis sufferers.
Unfortunately, many people believe that the disease is hereditary, while others think it is a terrible ailment cast upon one through a curse.
“We have to come out and tell the society that this disease is not a result of a curse. It’s simply acquired when you work and walk barefoot,” says Tonya.
Clementine Mukamashami, 16, started seeing her feet swell when she was only 13 years old. She said she wanted an education, but when she was stricken with podoconiosis, her dreams came down crumbling.
She dropped out of school while in P4 to take care of her immediate problem, swollen legs.
“I liked going to school but when this disease came, I had to move from one hospital to another looking for treatment. My health took precedence over education. If my legs get healed one day, I want to be a surgeon. We have been stigmatised, but one day the truth is going to come out. This is not inherited; this is a disease you get when you walk barefoot.”
Stigimatised by the community and families, sufferers such as Janviere and Clementine have now gotten a new hope in life, through Imidido Project.
Janviere is now the leader of people suffering from this condition who are under the care of Imidido Project.
“Imidido wants to change the perception of the society about people living with elephantiasis,” says Tonya.
But how does the project intend to achieve this? When I visited the project in Musanze, and talked to people who are gaining from it I came to realise that there are some things that we shouldn’t take simple in life.
Jean Damascene Nimana is the president of Abishyizehamwe(united people) a 100-member group involved in income generating activities, thanked to Imidido Project.
“ We managed to buy a grinding mill--here we grind maize grains from the local community and sell back to them in form maize mill.”
How did the idea of a mill come about?
“We realised that these people are discriminated against by society and they don’t have any source of income. We thought that if we could buy them a mill, then they could be able to take care of themselves,” said Tonya.
The project started only some three weeks ago, but from the optimism on its leader’s faces, all stakeholders hope that it is going to usher in a new beginning.
“My condition is at a very severe stage now. I don’t have anything to hope for now, apart from the mill that we have been given. I cannot farm, I cannot do anything; I’m incapacitated,” said. Nimana.
He added that he was a happy person during his childhood but he just remembers that at one point, his leg started swelling.
“It became worse. I couldn’t walk. It completely ruined my life.”