Born into adversity
Troubled times are no stranger to young Dilip Sahani, aged12 years, and his family. His father Tapan and relatives migrated to Baishai village in Manjha Block of Goplaganj district after their native village Majhariya was irrevocably affected by floods. Without a fixed source of livelihood in Baisahi village, his father and brother often stay away from the village to find work in other states. Such has been the dismal state of living that his family often has slept without food.
Additionally, living in mud houses where sand flies thrive have posed a severe health threat. Poor nutrition and cold living conditions likely weakened Dilip’s immune system, making him susceptible to the deadly Kala Azar disease.
In August 2015, Dilip was struck by a high fever. He recalls, “It was so bad I don’t remember much of my ordeal”. As is the norm in the village, his family took him to a rural health practitioner (RHP) who prescribed drugs for normal fever. A week into the treatment, there was hardly any improvement in Dilip. His mother recalls, “His fever wouldn’t come down. He had no appetite, complained of stomachache”. Dilip adds, “I barely could walk, even if I took steps, I felt I’d fall”. A second RHP in a nearby was consulted, yet Dilip’s condition remained critical. This had Dilip’s parents distressed and helpless.
A serendipitous detection
Anand Kashyap, DPO- VL of CARE India, comments, “Gopalganj has one of the highest Kala Azar cases in Bihar. Despite the disease being fully curable, people still suffer a lot. It usually affects people in their most productive years and drives the family into deep trouble. Through Care India’s awareness efforts cases of Kala Azar today are detected and treated in time.”
One day, a Kala-Azar Block Coordinator (KBC) from CARE India was in Dilip’s villages to follow up on other patients. He heard of Dilip’s case and went to see him. After interaction with the family members, the KBC learnt about Dilip’s fever and quickly pointed out the signs and symptoms that indicated Kala-Azar’s presence. With the help of KBC, Dilip was taken to a government hospital, and a blood test was done that confirmed Dilip was suffering from Kala-Azar. Proper treatment ensued, and Dilip began to regain his health.
Unfortunately, in March 2019, Dilip developed a rash on the face. Again, he was taken to an RHP, where the treatment proved to be unsatisfactory. Once again, another Kala-Azar block coordinator happened to detect the issue at hand during a follow-up visit. He noticed the spot on Dilip’s face was a symptom of PKDL (Post-kala-azar dermal leishmaniasis). The block coordinator ensured Dilip was taken to RMRI Patna for the diagnosis and treatment of PKDL. Once tests confirmed Dilip was afflicted with PKDL, he was treated for 27 days. To date, Dilip is carefully monitored by Front Line Workers (FLW) and health officials.
A long recovery, an enhanced awareness
“Not many people know of this disease in this village. Jiske sar par padthe wohi jaantha hai kitna khatin hota hai “says Dilip’s relative (Only those who suffer it know how devastating it is). Dilip’s prolonged illness took a heavy toll on him and his family. It left them mentally, emotionally and financially drained. His father had to leave work temporarily to take care of him. The silver lining has been that Dilip received proper treatment, free-of-cost, with regular follow–up visits. His mother recalls, “When my son was in the hospital, I used to stay with my son all the time. I had sleepless nights as I thought I’d lose him. His appetite has completely gone, once he recovered, we were scared he’d start eating mud, that’s how hungry he was.
Today, Dilip is acutely aware of the factors that cause Kala-Azarand easily can identify the disease-causing female sanbalu makhi. The frequent visits of FLW and KBCs have ensured his family and neighbours recognize the sand flies’ propensity to breed in warm, unclean places. While Dilip’s father and mother are still not aware of the exact cause, the family takes effort to keep their surroundings clean, and bednets are used frequently. Such has become the level of the family’s involvement towards the alleviation of Kala Azar in the village. Dilip’s chacha, who works and stays in the village, has volunteered to be a key informant of CARE India’s Kala Azar Suspect Case Identification Strategy.
Dilip’s father adds, “Government hospitals aren’t accessible to people like us. You need to arrange transport to go avail treatment. It’s easier to go to an RHP but for this disease (Kala Azhar) we have learnt government aid and hospitals is the only place for proper treatment.”
Anand comments, “The first step to address Kala Azar is awareness. It affects hundreds, yet very few have adeqaute information about it. We need to ensure that every single citizen of this district knows about the challenges of Kala Azar and where to seek treatment. Today with the expansion of media, especially social media we can reach everyone with the right information. This is the first step towards ensuring that people are empowered with the necessary information to identify and recognize Kala Azar symptoms and seek diagnosis and treatment. KBCs along with KTS are working towards the Active Case Detection strategy, community meetings and patient to patient interaction.”
Disillusionment makes way for dreams
Kala Azar not only affected Dilip’s health adversely, but it also disrupted his education for nearly two years. Even after his recovery, his parents thought it’d be best to keep him at home to restrict his exposure to other health scares. Dilip hopes to resume his schooling this year. His parents say, “He sometimes has these tantrums where he cries a lot and says meri life barbaad hogayi (My life is ruined)”.
He is keen to attend a private school, with computer facilities, this coming session. The only silver lining of the illness has been the gift of time that’s allowed him to watch Youtube at leisure and hone his passion – singing. His idol is Pawan Singh, a famous Bhojpuri singer, and Dilip hopes to be a singer someday. Here is he is seen singing a few lines of Pawan Singh’s Bhakti Geet. This sums up his spirited fight against Kala Azar.
About the program: The Bihar Health department has a strong network of diagnostic and treatment centres where drugs and diagnostics are provided for free to all Kala Azar patients. CARE India’s Kala Azar block coordinators along with their extensive network of key informants under the active case detection strategy visit villagers for early identification of Kala Azar suspects and ensure timely diagnosis and treatment at Government Health Centres.