COVER STORY

HOPE FOR INDIA'S
FORGOTTEN

By MELISSA YUE WALLACE

Raja Bai was a 21-year-old woman, pregnant with her first child and living in the Panna district of Madhya Pradesh state in central India.

She began experiencing unusual symptoms – a fever, swelling and intense pain – and brought them to the attention of a healthcare provider at the local hospital during a prenatal checkup. It was discovered that she had Lymphatic filariasis (lf), a parasitic disease that causes a person’s limbs to swell so large, they are often compared to an elephant’s.

Suddenly, the dreams Raja Bai had of running and playing with her child came crashing down. lf was considered a “curse” in her village. She worried about the pain and the disability, but most of all, the terrible stigma that she would face.

“I felt fear, anxiety, the pain of stigma and exclusion from society,” the now 51-year-old says. “I didn’t have the will to live long.”

But for the sake of her child she sought medical treatment at immense personal expense – 10,000 inr (C$193) a year. But for 30 years, Raja Bai did not find much relief. Then one day she met Sunil Gupta.

Gupta works as a coordinator for Sankalp, a program designed to help people with leprosy and lf. The program is supported by Effect: Hope (The Leprosy Mission Canada), an international Christian development organization based in Markham, Ontario, that has been providing lifesaving care, access to medicine, surgeries, education, and hope to people with leprosy, lf and other neglected tropical diseases since 1892.

Sankalp means “determination” and the health care workers are determined to not only alleviate the suffering of patients, but to show them love, compassion, and acceptance. Each year, they seek out and find people with leprosy and lf. They provide care and treatment for the diseases, self-care training, in-home care, and work within the schools to find affected children before disability sets. They also educate communities about the diseases to eliminate stigma.

Last year they were able to reach 2,700 people.

Gupta met Raja Bai while going door-to-door to find people suffering from diseases. He informed her of Sankalp’s health camps and Raja Bai decided to go.

Looking around the Sankalp camp, one sees people with severe cases of lf. Their legs have swelled to the point that they have difficulty walking and they have often suffered a loss of livelihood. Many have been abandoned by their spouses and families, and those that stay together face a lifetime of ridicule by other community members. There are people with various deformities, a result of not seeking treatment for their disease quickly enough. But you will also notice smiles. After being ostracized from their own villages, many find comfort in being with others who have had similar experiences.

Nonelal lives a two-hour walk away from the camp. He had leprosy in the past, but is now cured thanks to Effect:Hope’s hospital, The Leprosy Mission Naini Hospital in Uttar Pradesh. He required reconstructive surgery to fix clawing in his hands and unfortunately, still carries the physical disfigurement as a result of his battle with leprosy. Even though he is cured, he continues to face stigma.

He attends the camp to make sure he is correctly performing the self-care techniques he learned at the hospital. It is a long way to travel, but he says that he finds comfort in sitting and chatting with everybody at the camp. “Most people usually don’t talk to me or sit next to me in my village,” he shares, sadly. But at the camp, he beamed from ear-to-ear as one of the Sankalp health care workers sat next to him during the learning session.

Also at the camp, Raja Bai learnt how to manage her foot pain, exercise, and apply bandages. The team provides her with a self-care kit and counseling.

Months later, Raja Bai is still receiving support from Sankalp’s health teams, who visit regularly to provide physical, moral and psychosocial support. Raja Bai also acts as an advocate and provides encouragement for those recently diagnosed. “I now hope to live a painless life because of the support from Sankalp,” she says.

Raja Bai was not the first or last person Gupta brought to Sankalp. He goes into remote villages, often on foot, to find those who are hiding their disease out of fear or who may not know what they are afflicted with. He also helps run the camp sessions, tasked with registration, taking measurements to provide protective footwear, delivering health education talks and distributing health care kits.

Reflecting on the camp, he says, “I observed many people in desperate need of medical and social support which are impossible for the government system to fulfill, so we fill that gap. People also need emotional support which they don’t have in society, so we are happy to serve them and establish hope.”

Effect:Hope works in nine countries: India, Bangladesh, Nepal, Nigeria, Cote D’Ivoire, Liberia, Ghana, Kenya and Democratic Republic of the Congo, and conducts transmission research in Canada and the us. For over 125 years they have sought to reach people affected by leprosy, lf, buruli ulcer, worms and other neglected tropical diseases. In addition to treating individual patients with medicine, providing surgery and the traditional activities of an international medical charity, they also focus on strengthening the existing health systems in the countries they work in by training workers, building their capacity, and improving the delivery of services. They also fund research to explore how these diseases are transmitted in order to eliminate them for good.

Last year, Effect:Hope helped more than 4.5 million people in need.

“Our strategy has been to work with experienced partners on the ground who have already built relationships with existing systems such as ministries of health or local governments,” says Maneesh Phillip, Effect:Hope’s interim director of international programs. “Our partners are in sync with government policies, can speak the local language and understand the context, so it’s beneficial for the local economy to build their capacity and channel the funding we receive from our supporters.”

Phillip, originally from Uttarakhand, a northern Himalayan state, has worked at Effect:Hope for four years. His passion for helping people in need comes from personal experience. When he was growing up, his father worked at an ngo and became ill on one of his field trips. He developed a high fever and wasn’t getting better in the hospital.

“They had misdiagnosed him and he was being treated for typhoid, when he actually had a lethal form of malaria,” says Phillip. “Within three days, he died from this misdiagnosis and delayed treatment. So this is part of my motivation to work with people who are affected by diseases and training health workers and systems...so things like this don’t happen to anyone.

“Ultimately, our job is to help people who are discriminated against and stigmatized to live a life of dignity. When we treat them with kindness, respect and compassion, our hope is that their communities will do the same.”

The patients who arrive at Effect:Hope’s Naini hospital often come in with disfiguring skin sores, a clawed hand or other disabilities and nerve damage. For many, the hospital’s existence is a Godsend; providing respite from the stigma and looks of disdain that make them feel like outcasts. Where other hospitals turn them away for fear of “catching” the disease, here, they are accepted and receive effective treatment for this curable disease, as well as assistive devices, surgery, physiotherapy, and psychosocial support.

Many of the patients receive care from Pinki Tiwari, 24, a nurse who has worked at the hospital for four years. Tiwari helps approximately 40 patients a day by checking their vitals, giving medication and dressing their wounds. She is passionate about her patients, because she used to be one.

Tiwari began showing symptoms of leprosy at the age of eight, but since she and her family didn’t recognize them, they didn’t come to the hospital for another six years. When she arrived, her foot was paralyzed and her hands clawed so badly that she could not hold a cup or grip a pencil. Reconstructive surgery restored movement in her wrist and feet and after weeks of healing and physiotherapy, she was able to walk almost normally. She had more surgery, but unfortunately, delaying treatment had caused Pinki’s fingers to claw permanently.

She became depressed, but the hospital staff encouraged her to have hope for her future. Their compassion gave Tiwari the ambition to become a nurse. She excelled in her studies and is grateful to work at Naini Hospital.

“I enjoy my work because I have an opportunity to care for patients with leprosy,” she says. “I would like to thank anyone who supported the Naini Hospital, because they changed my life. It’s because of them that patients with leprosy can move forward.”

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For more information about Effect: Hope and its programs, visit www.effecthope.org or call 1-888-537-7679.