Living with leprosy – a fight against disability

Niru and other patients at St Josephs Leprosy Centre

July 28, 2017

This report was kindly contributed by Jennifer Mangeard-Lourme, Lepra‘s Programmes Officer for India and Maartje Pronk, Lepra’s Programmes Officer for Bangladesh and Mozambique.

The story we often hear about those affected by leprosy is that they initially notice a numb patch on their skin, and then go on a long and expensive journey to find the doctor who eventually diagnoses and treats them with Multidrug Therapy (MDT). For some, this is where the story ends.

After only a few days of treatment, the patient is no longer contagious, and if they are fortunate, due to early diagnosis, they do not develop any disabilities. However, for many MDT arrives too late, and they are already living with disabilities caused by leprosy.

Even with early treatment, disability may still occur – not necessarily at the time, but later on in their lives. Loss of sensation means that people cannot feel cuts and burns as others do and will be more prone to ulcers, which without proper care can lead to disability. Neuritis, reactions and complications are part of a person’s everyday life. M. leprae is never really gone from someone’s body and people continue to need regular medical care.

Measuring leprosy-related disability

In 2016, Lepra conducted a study in Bangladesh to recognise disability in 361 people affected by leprosy. Participants were asked a set of questions from the Washington Group Short Set – an internationally recognised approach of measuring disability. Disability in leprosy is usually determined by clinical assessments conducted by doctors and according to the WHO classification. The Washington Group questions offer a self-assessment of disability that is rarely used with people affected by leprosy.

The Lepra study consisted of five questions that focused on the core functional domains of seeing, walking or climbing, remembering or concentrating, washing or dressing, and communicating. The results were fascinating. Since people affected by leprosy can develop morbidities and disabilities that affect visual, movement-related and self-care abilities, the study found, as expected, higher percentage scores in these categories. Some of the other results were surprising, and a huge difference was observed between men and women affected by leprosy. Women reported greater difficulties with their sight, walking, concentrating and, most significantly, their ability to carry out self-care, where 28% reported that they experienced ‘a lot of difficulty’ when asked about their ability to carry out activities like washing their body or dressing. For men the corresponding figure was only 9%.

In general, 50% of people affected by leprosy experience depression or anxiety. The results of the Washington Group study reflected this: for example, 7% of people found difficulties in concentrating or remembering, both symptoms of mental health issues. The results also showed a correlation between disability and social exclusion. For example, among people who never attended community events, 48% indicated not being able to wash or dress themselves at all.

Surprisingly, of the men and women with a Grade 2 disability, which means visible damage or severe visual impairment, only 15% of women and 11% of men reported greater difficulties with their sight. The deformities of leprosy often affect feet, however only 28% of women and 23% of men reported difficulty with walking or climbing. This shows a discrepancy between what clinical staff members consider a disability and how affected people perceive their disability, as the percentages reported by clinical staff as having Grade 2 disability were much higher.

Fighting disability and stigma

To help in the fight against disability, Lepra’s St Joseph Leprosy Centre (SJLC) in Khargone District, Madhya Pradesh, India offers reconstructive surgery. With a simple surgical procedure and a month of physiotherapy exercises, people can get a significant amount of dexterity and functional ability back in their hands and feet and avoid blindness.

Photo of a young girl being treated for leprosy-related disabilities at St Joseph's Leprosy Centre, Madhya Pradesh, India
Niru at St Joseph’s Leprosy Centre, Madhya Pradesh, India

Surgery also significantly reduces the stigma people experience as their disabilities are often visibly corrected. The centre recently became an accredited training centre and provides tailoring and computer science training to the residents during their stay. Counselling is also an important part of what people with leprosy need and the counselling service is being expanded this year.

The centre is the only one providing reconstructive surgery in the state of Madhya Pradesh, which means people often have to travel long distances to receive treatment. Niru (pictured above) lives 300 kilometres away from the centre. Despite being only 12 years old, leprosy has already affected her hand and her right foot, which she cannot lift up anymore. The medical care she receives at the centre will help her regain the strength and movement of her hand and foot. Being at high risk of developing complications, she will nonetheless need to be checked every three months for the rest of her life.

As we know, the story often doesn’t end after receiving treatment for leprosy. It’s a complex disease, where physical and emotional difficulties can occur if left too late and also years after treatment, due to complications. It shows once more that health policies and programmes cannot only focus on stopping the transmission of this disease.

It is imperative that treatment goes beyond multi-drug therapy and that organisations continue to fight disability and social exclusion to really improve the quality of life of those affected by leprosy.

Find out more about Lepra’s work:

As part of the Triple Zero Campaign, ILEP Members are working together to prevent girls and boys suffering from the lifelong disabilities which are caused by leprosy.

(Top photo: Niru with other patients at St. Joseph’s Leprosy Centre.)