This year’s World Leprosy Day – on Sunday 28 January – will focus on promoting a healthy future and preventing children from developing disabilities associated with leprosy.
Tens of thousands of children are diagnosed with leprosy every year meaning that the disease is still being transmitted throughout communities.
Learn and play
The most common age for children to show signs of leprosy is between 10 and 14. Fear and stigma in families and communities mean that many people are reluctant to seek treatment for their children. Late detection increases the risk of children developing life-changing disabilities, affecting their future. These disabilities prevent affected children going to school. Without adequate education, these children are less likely to find meaningful employment later in life, and may find themselves trapped in poverty and at risk of further health problems.
But a child’s education is only part of their development. Play is known to be an important factor in practising the social skills required as they grow up. However, the stigma of leprosy still looms large in many communities and children can find themselves ostracised. They can be bullied by their classmates and find themselves isolated. They don’t understand why. They only want to play with their friends, but they are pushed away.
The stigma surrounding leprosy prevents the early detection of the disease and increases the risk of more serious disabilities developing. Disabilities resulting from leprosy increase the likelihood of affected children missing out on a happy childhood and lead to a greater chance they will experience social exclusion as they get older.
- Of every 100 people diagnosed with leprosy, nine will be children
- Today 50 children will be diagnosed with leprosy and so join those facing the fear of exclusion and discrimination
What is leprosy?
Leprosy (also known as Hansen’s disease) is a chronic infectious disease caused by bacteria mainly spread through droplets from the nose and mouth of people suffering from untreated leprosy (produced when they sneeze or cough).
It causes nerves damage resulting in lack of sensation. Cuts and burns cannot be felt by those affected, increasing the risk of infection. Left untreated the nerve damage can affect the muscles in the face, hands and feet and lead to permanent disability and – in some cases – blindness.
If detected early, leprosy is easily treated using multi-drug therapy (MDT) and the early stages of a disability can be managed and often reversed by physiotherapy. As well as treatment, social inclusion is key to ending leprosy.
Aged just 10 years old, Sakshi noticed that one of her fingers had become swollen and painful and later her whole hand became numb. She couldn’t even grip a pencil. Her classmates started to bully her, calling her “lulli” – a derogatory word for someone with a disability. She had to stop going to school as she couldn’t keep up with the work.
Sakshi suffered for a year as a result of a misdiagnosis – her family paying for expensive treatments that didn’t work. Eventually, she was treated by trained doctors who provided her with 12 months’ MDT and steroids. The drugs, in combination with physiotherapy and assistive devices, saw Sakshi’s condition improve. She regained the strength in her hand and returned to school to follow her dream to become a teacher.
Countdown to zero
A new global partnership has been launched that will accelerate progress towards a world without leprosy. The Global Partnership for Zero Leprosy brings together pharmaceutical companies, WHO and NGOs to focus on new research in diagnostics and therapeutic tools, getting expertise where it’s needed most and raising the profile and funding of leprosy programmes around the world.
According to the ILEP Federation, over 18,000 children were diagnosed with leprosy in 2016 and rates remain high particularly in endemic areas such as Brazil, India and Indonesia.
ILEP’s Triple Zero campaign aims to see disability, discrimination and transmission eradicated. The partnership is working to prevent children suffering from the lifelong disabilities caused by leprosy, advocating for the removal of laws which discriminate against affected people and stopping transmission altogether. By working together to prevent, treat and cure leprosy in children, we will be one vital step closer to a world without leprosy.
This World Leprosy Day show your support and raise awareness among your social networks.