Global Alliance to Eliminate Lymphatic Filariasis, Madagascar:
Benintsy’s story – as told by Lisy Nirina Rasoazanamiarana
Benintsy’s story takes place in the rural and remote village of Ampasimanjeva situated in the district of Manakara located in the South East of Madagascar. As the Manager of the National Lymphatic Filariasis Elimination Programme how could I forget the morning in July 2004, when I saw the depth of “pessimism” among people suffering from lymphatic filariasis. Even now, years on, in my mind’s eye I can see this depressed young boy accompanied by his father, twenty-two-years old, half-naked and exhausted after a long walk from his village.
Benintsy came to Ampasimanjeva Hospital, like other men recruited to benefit from a practical session of the training focused on hydrocele surgery which had been co-organized by WHO, the Ministry of Health and two NGOs. However, the diagnosis of Benintsy’s symptoms was elephantiasis of the scrotum and lymphoedema of both legs, but not hydrocele. This diagnosis meant he did not fit the criteria for surgery which was a great shock and disappointment and sent him into a deep depression.
Without prompting his father described Benintsy’s life. He said, “Benintsy has been suffering for many years with acute pain invaliding him to his home environment and impairing his ability to live a normal life. In fact, most of the time, he wanted to stay home to avoid any teasing about his condition”.
I sympathised with Benintsy’s father who I knew was trying to bargain for a better life for his son, and even guided by the diagnosis I found it difficult to tell Benintsy, “It’s better for you to go back home to your village as nothing can be done for you”. We further assessed the situation and committed ourselves to take action.
The Ministry of Health press attaché, who was part of the delegation, made a video to raise funds from private donors. Benintsy made a memorable appearance on national television. Even the President of the Republic and the Minister of Health were aware of Benintsy’s story and his needs. On 1st February 2005, in the capital, Antananarivo, Benintsy had the operation to alleviate his symptoms and was discharged the very next week.
Benintsy went home and you may be curious to know the end of his story. Recently during a half-day visit to Benintsy’s village for the MDA coverage cluster survey which was funded by Izumi Foundation we heard the end of the story.
To our great surprise, Benintsy was not there! He has a job in Morondava, a district very far away from his village (1,500km). The chief of the village development committee said, “Few have ever got to experience Benintsy’s privilege in their lifetime”.
It was a tough challenge for the national programme to ensure a renewal of life for Benintsy, but we made it. In addition to helping Benintsy, the story launched a strong drive to raise the awareness of the disease in Madagascar. The story leveraged focus of the national lymphatic filariasis programme and deserves to be told and retold as firstly, it shows how− even in the bleakest times− love and human kindness can light up the darkness and give hope to those who suffer from the disease, and secondly, it is nice to simply share something we are proud of.