Neglected no more - because I matter.

Sankalp Integrated Leprosy and Lymphatic Filariasis Program

Location: Panna District, Madhya Pradesh, India

Program Length: April 2017 – March 2020

2018 Fundraising Need: $ 82,671

Why the Program Exists: India has the highest number of Neglected Tropical Diseases (NTDs) in the world. 40% of all lymphatic filariasis (LF) diagnoses and 60% of all leprosy diagnoses have been identified in India. Like leprosy, LF is a highly stigmatized disease and one that targets people living in poverty. The people who are infected often live in the same villages as those with leprosy. Disease rates are high due to poor sanitation, access to clean water and access to health care.

Because of the high prevalence of LF in India, and effect:hope’s extensive history of caring for leprosy patients, it was proposed that the Cure & Care delivery for both diseases be combined to maximize the number of people cured. Health care workers supported by effect:hope are now trained to identify and treat both diseases.

People afflicted with LF and leprosy often suffer from physical deformities, limited mobility, excruciating pain and isolation. These may also lead some affected people to develop mental health issues as well. Though the diseases are treatable, if found too late, they can cause irreversible disability. Unfortunately, many people will live with their disease for years before getting help, due to fear of the intense stigma from their family and community.

The Sankalp Integrated Leprosy Program aims to:

  • Improve health for patients with LF and leprosy
  • Prevent infections by cleaning vector breeding sites
  • Raise awareness of the diseases both in affected and non-affected populations
  • Teach sufferers how to care for themselves so their conditions don’t worsen
  • Strengthen existing LF/leprosy services
  • Increase access to social benefits and reduce stigma and discrimination faced by people with the diseases

Sankalp means determination, which describes our hopes to alleviate our patients’ pain and suffering.

Program Impact:

From April 2017-March 2018, we conducted the following activities in Madhya Pradesh, India, through the Sankalp Integrated Leprosy program in partnership with UK-based organization, Lepra:

  • Identified 2,372 people affected with LF and 1,837 people affected with leprosy and provided them with health support.
  • Organized 44 community health camps for 851 people affected by LF and leprosy. 53% of patients were women. 40 people affected by LF (17 men and 23 women) reported a reduction of swelling (approximately 1-2 cm) after being treated at our community health camps, using protective footwear and practising self-care on a regular basis
  • 69 people affected by leprosy were identified by the team and provided with treatment before any deformity or disability occurred
  • 1,362 people affected by leprosy and LF along with their family members received psychosocial counselling
  • Distributed 417 pairs of tailor-made protective footwear to affected people
  • 43 people affected with leprosy gained access to social benefit programs that improved their quality of life
  • Performed 73 hydrocele surgeries (to drain fluid and correct swelling) and 5 reconstructive surgeries
  • Found 120 new patients with leprosy and referred them for treatment
  • Formed 20 self-support groups and trained them in health education and in how to fight stigma and for their rights
  • Trained 417 health workers who help mobilize communities for early case detection and reducing stigma
  • Organized or engaged with various public events to raise awareness of the discrimination or stigma associated with leprosy and LF. These included campaigns, anti-leprosy day, 5 rallies, and 2 meetings with local groups of women
  • Conducted 19 health education activities on the importance of sanitation and hygiene practices. Two exhibitions were organized in remote areas for approximately 10,000 people. The exhibitions covered the two core diseases through various information, education and communication material.

By March 2019, we also plan to do the following:

  • Conduct 218 home-based self-care training sessions for affected people and their families
  • Organize 43 community health camps
  • Identify and provide treatment for a minimum of 70 people affected with reactions and complications to leprosy
  • Manage 100 ulcer cases through home-based follow-up visits
  • Provide around 1,130 pairs of protective footwear to people affected by LF or leprosy
  • Identify and provide treatment for 135 LF-affected people suffering severe attacks
  • Identify and provide treatment for entry point infections to 135 LF-affected people
  • Establish 40 self-care groups in affected communities
  • Provide psychosocial counselling to 1,700 affected people through home-based follow-up visits (identify people affected with leprosy or LF who have a low drug adherence and provide counselling in support for a better treatment adherence)
  • Facilitate another 100 hydrocele surgeries
  • Refer 55 people with leprosy-induced disabilities for reconstructive surgery
  • Conduct Healthy Contact Surveys for people affected by leprosy (around 500 people will need to be examined)
  • Conduct health education sessions and screening surveys in 40 schools for 200 teachers and 5,000 students
  • Train 50 private health service providers in early detection and self-care techniques
  • Train 400 government health service providers in early detection and morbidity management
  • Liaise with 10 Village Health and Sanitation Committees in LF vector control measures and provide training
  • Run 20 health education activities in communities
  • Connect around 260 affected people with government social benefits

Support the Sankalp Integrated Leprosy program in India!

Your gift will go towards the plans outlined above including:

  • Treatment and surgery for people with LF and leprosy
  • Providing protective footwear. Walking barefoot increases the risk of parasite infestations
  • Self-care training for people affected by LF and leprosy to prevent and management disabilities
  • Establishing self-support groups to build stronger communities
  • Training health workers and community staff in LF and leprosy for more accurate diagnosis and referrals
  • Raising awareness of the diseases and reducing stigma in communities

What is Lymphatic Filariasis and Leprosy?

Lymphatic filariasis (LF) is a painful and profoundly disfiguring disease caused by microscopic worms that form “nests” in the human lymphatic system, affecting the body’s fluid balance and ability to fight infections The disease is also known as Elephantiasis because sufferers sometimes have limbs that are so swollen, they mimic those of elephants (read more about Lymphatic Filariasis)

Leprosy affects the skin, mucous membranes, and nerves, causing discoloration and lumps on the skin and, in severe cases, disfigurement and deformities. Although it can be cured, many sufferers are isolated and shunned from society. The first sign of the disease is often skin lesions all over the body. Then the person begins to lose sensation in their fingers, toes, and limbs. (Read more about leprosy).

Funding and Implementing Partners

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